Just a short post to let you know that I haven’t disappeared - I’m just moving!
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
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):
REMEMBER: Denial - in small amounts – fosters hope and will carry you through…
DON’T FORGET: Excessive denial will always get you into trouble.
MOST IMPORTANT: Choose your battles (I mean, fun events) – WISELY. Planning to do LESS will equal MORE.
ALWAYS BELIEVE: Optimism, faith and perseverance will ALWAYS reward you with courage, comfort and MEANING.
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, 14th 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):
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…
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 ‘
I’m writing in the National Migraine Awareness Month Blogging Challenge during June, 2012; let’s get the genetic, neurological disease of migraine out into the open.
Please follow my blog and others as we expose migraine truth, myths and our lives as we know them during June. www.FightingHeadacheDisorders.com This challenge has been initiated by The National Headache Foundation.
My Wego Health “Mugshot”: Migraine is a genetic NEUROLOGICAL DISEASE - not a HEADACHE.
Please support Migraine Awareness - get the FACTS, not the MISINFORMATION.
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:
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 4th 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.
My 2012 badge earned for writing in the WEGO HAWMC: “Best New Blogger”. Thanks WEGO!!
“I am a writer”
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 -
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 8th, 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…”
Tuesday May 1st, 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!