Girl, Interpreted:

“Do That to Me One More Time” NMAMBC #5

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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“June Is Bustin’ Out All Over” NMAMBC #4

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

“Just Shoot Me Now” (aka, “Trigger-Happy”)

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

“Tea for Two” - OR - “The WORLD is My Teacup”

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”

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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