Wednesday, July 24, 2013

Guest Molly Clarke - "Migraine and SSD"

Molly Clarke is the Social Media Coordinator for Social Security Disability Help and contributes regularly to the Social Security Disability Help blog.
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What You Should Know about Applying for SSDI or SSI with Migraines
If you suffer from migraines, you already know that they can be debilitating and often result in significant time lost at work. However, you may still be wondering whether or not your condition is severe enough to be considered a disability and therefore qualify you for Social Security Disability (SSD) benefits.
If you have questions regarding migraines and disability benefits, look no further. The following article will provide you with a general overview of the disability benefit programs and will give you the information you need to begin the SSD application process.
SSDI and SSI
SSD benefits are governed and distributed by the Social Security Administration (SSA). The SSA currently operates two main programs that provide benefits to individuals who have disabilities. These programs are Social Security Disability Insurance and Supplemental Security Income (SSDI and SSI, respectively).
SSDI provides financial assistance to disabled workers and their families. To qualify for SSDI, applicants are required to have earned an income and paid taxes into the system for a specific amount of time.  SSI is a needs based program that provides benefits to elderly and disabled individuals who earn very little income. To qualify for SSI, applicants cannot exceed very strict financial limitations.  In some cases, individuals may be able to qualify for benefits from both programs.
Learn more about the technical eligibility requirements for SSDI, here and SSI, here.
Definition of Disability
Although there are very specific medical requirements that individuals must meet in order to qualify for benefits from either program, there is one basic requirement that all applicants are required to meet—and that is matching the SSA’s definition of disability. The SSA considers a person disabled if they meet the following criteria:
  • You cannot do any type of work.
  • Your disability has lasted or is expected to last at least one year or result in death.
Migraines and Social Security Disability Benefits
Typically, the SSA uses a guidebook of disabling conditions—called the blue book—to determine whether or not a person qualifies for disability benefits. Unfortunately, there is no listing in the blue book for chronic migraines. Although this can make it more difficult to qualify for benefits, it is certainly not impossible.
Individuals that get migraines as a result of another medical condition may be able to qualify under that condition instead. You can access a list of all disabling conditions, here.
If you do not meet or match the requirements of another listing, it is still possible to qualify. Rather than proving that you meet specific medical criteria, you will have to prove that your migraines regularly prevent you from performing work activities.  This may include concentrating, following directions, walking, standing, lifting, or interacting with others. The SSA will also evaluate the frequency and duration of your headaches to determine how much time away from work your condition may cause. It is important that you provide evidence of any other conditions you may also have. This is due to the fact that the SSA will evaluate the combined effects of all conditions that you have, rather than just the effects of your main condition.
Because your condition is not listed in the SSA’s blue book, you will have to provide the SSA with extensive medical documentation to support your claim. This documentation may include records of the following:
  • Your diagnosis.
  • Any hospitalizations or medical appointments.
  • Any treatments you’ve received and your response to them.
  • Any lab tests or diagnostic imaging.
  • Written statements from doctors and former employers that explain how your symptoms affect your ability to work.
Social Security Disability Application Process
Once you are ready to begin the SSD application process, you can do so online or in person at your local Social Security office. You should have your medical evidence as well as employment and financial records readily available.
It is important that you realize how difficult and complicated the application process may be. In fact, many initial SSD applications are denied. If your initial claim is denied, it is important that you do not give up. You are allowed to appeal this decision and continue to seek the benefits you need to survive.
For more information about the Social Security Disability application process, visit Social Security Disability Help or contact Molly Clarke at mac@ssd-help.org.

Sunday, June 30, 2013

2001: A Space Odyssey: "I am putting myself to the fullest possible use, which is all I think that any conscious entity can ever hope to do.": (Day 30)

Hi there,

   It's ok to cry.

    I know that this pain is really scary, and that your head really hurts, but it's ok to cry. Nobody's going to see you here, and even if they do, crying doesn't mean that you're a fraidy-cat or a baby.

   I'm not saying that you should cry all the time. That doesn't do any good. But when something like this happens, when it feels like gnomes are jumping up and down in your brain on pointy pogo sticks, or you're wearing a hat that's too tight and you're scared, it's OK to cry.

   Crying is something that shows.  People don't know anything is wrong unless you tell them. They can't see your headache. Sometimes you can talk to them and tell them your head hurts, but sometimes, I know, your head hurts so much, talking doesn't make sense. It's OK to cry then. Crying is a form of talking when you can't talk with words.  It's your body talking.

  You don't have to pretend your head doesn't hurt.  That pain is real.  It is.  Real things matter.

  I know that in the book  "The Twelfth Easter Bunny", the child who never cried got the most beautiful egg.  But you want people to get to know YOU.  You're not some kid in a story book.  This is real.  This isn't make believe.  It's OK to play make believe with your friends when you don't hurt, but then you put away the dress-ups and the toys and you are you again.  And right now, you hurt.

  And right now, it's OK to cry.

Love,  
Gretchen, Who's Been There

Saturday, June 29, 2013

Misfits: (Day 29)

   The prompt today is free form, with no guided suggestions except for one: that if I suffer from Chronic Migraine to make sure to incorporate it in my blog today. So I hereby incorporate Chronic Migraine in today's blog.
   However, I don't think that it's fair for me to just incorporate Chronic Migraine, as that's not the only kind of migraine that I deal with that makes me stand out from the crowd.


Chronic Migraine -I'm a Misfit

     A purple ribbon symbolizes migraine awareness. The red stripe symbolizes the chronic status. In order to be diagnosed with chronic migraine, a sufferer needs to suffer from migraine at least 15 days a month. So over half the month. This is to differentiate from episodic migraines, where a person will "only" have migraines either a few days a month or less often.
    But remember, I don't have regular chronic migraine, I have Status Migranous. This simply means that their migraine has lasted for more than 72 hours straight. So a person who has a migraine for three days and then has it break on Day Four, has suffered status migranous.
   I guess you could say that I'm an over achiever in the chronic migraine/status migranous spectrum. That whole - I haven't had a day without a migraine for over 11 years - bit, since early fall of '01 when I got an eight week debilitating migraine that just decided to stick around pretty put paid on me fitting in with most of the "Normal" migraine community. But that's ok, I was already a misfit.
   



Pediatric Migraine 
- The Beginning of Being a Misfit -

    The pink and blue stripes symbolize the boys and girls who suffer from chronic migraine or chronic daily headache. By age 15, one in ten children will have suffered a migraine. I find this a horrible statistic, as it goes unrecognized. And yes, sure, some could argue that it's only 10% of school aged children have or will suffer a migraine, but I think that it needs to be paid more attention to in general. 
    I know that I've had migraines (or at least headaches) for as long as I can remember. I remember hiding under the stairs in preschool, sobbing because my head hurt and I didn't want to have to go outside and play with my friends. I think I was maybe 3 or 4? I just grew up with the migraines. I didn't like them, they hurt, but, as a really little kid, I thought that it was just a part of who I was. And so it was. The migraines grew with me, getting more severe with age. 
    I started to really stick out from my peers in mid-school when my 2 week migraine runs turned into 4-6 week migraines, and then, finally, the infamous 8 week migraine happened and all bets were off.


Chronic Migraine & Depression
 - How I Stick Out Even More -

    The purple ribbon with the black half-stripe represents depression. Chronic migraine and depression are often found together as they're both have roots in chemical imbalances of various chemicals and signals in the brain. That's why antidepressants can effect migraines and migraine medications effect depression. 
    When I was forced out of school in the spring semester of my junior year because of my migraines, I went into to a depressive episode that lasted for close to two years and was so severe that I started to shut down my organ functions and was sleeping up to 20 hours out of 24. It was a terrible time, and during that time I just shoved everything in a "deal with it" pile, rolled over, and went back to sleep. Sleep was my only vaguely effective painkiller. But it was causing its own problems like the beginning hints of body shutdown. 
    Fortunately for my sake, I had a wonderful support system that eventually took a metaphorical cattle prod to me and made me wake up and get better. And by "get better", I obviously don't mean that I got cured of my status migranous. What it means is it made me wake up and face reality in a way that many don't ever have to.
    I've now been going to both a psychiatrist and the cattle prod holding body-centered psychotherapist for so long that I've basically lost track of the years; I think 6 years? And when I really decided to take advantage of the opportunity I was given, I learned to look at my migraines, and my life in general, in a way I guess most people never get. 
    I've been made aware of just how differently I view things like the pain of my chronic migraine through this month's prompts when I've been surprised or taken aback by what I perceive as negativity about the migraines. I've come to accept the pain as a part of Life. I don't have to like it, I just have to accept that it is there, only then can I move on to finding the positive. I'm almost afraid that people reading these entries will think that I've given into the pain, or else I'm faking how badly I hurt because I don't have it effect my life the way that it seems to most chronic migraine suffers. 


Chronic Migraine Trifecta
- The Last Way I am a Misfit-

    So I have now given three ways, Chronic, Pediatric, and Depression, in which I am a misfit from most of the migraine community, making me stick out like a sore thumb in most online communities. I'm learning how to blend the edges of what I think with what is appropriate for the situation. And yet again, I am a misfit. For while I may be a perhaps extreme case of each of the examples given, there is a badge for all three ribbons to be displayed at once already made up. So I am a misfit by not being the total misfit that I first appear.


Quantum in me fuit,
Gretchen

Friday, June 28, 2013

Saturday Night Live: (Day 28)

How does humor help you cope?

   Humor is a huge help for me. Life's a giant cosmic joke, after all, and, as the saying goes in my family, "Laugh; it drowns out the screaming."

   Keeping a good sense of humor is key to dealing with things like Migraines that can be viewed negatively. I'm reminded of the part of Harry Potter and the Prisoner of Azkaban where the class is learning to face the Boggarts, which take the form of whatever the witch or wizard facing it fears most. The spell to defeating the boggart is to make it ridiculous by making it appear differently. Laughter is it's enemy.
   Pain, I've found, is much the same. First, you have to realize I don't actively laugh at my migraines. Not usually at any rate. But finding humor in the situation, or at least minimizing the negativity is huge.

   Also, watching comedy of a certain caliber; that which entertains, but isn't obvious, can effectively distract me from focusing on the level of pain I am, and rather can immerse myself in the plot. Reading books with a similar level of entertainment value can do the same thing.
   I need a happy ending. I don't do well with tragedies, especially when I'm in a lot of pain. But books that have triumphs over tribulations can be very pleasing and uplifting. But comedies are the best.

Quantum in me fuit,
Gretchen

Thursday, June 27, 2013

Anger Management: Goosefrabba: (Day 27)

How do you constructively deal with the anger and resentment that arises as a result of living with Migraine/Headache Disorder?

   Eep! This is a very agitating prompt. I even originally censored it in my mind, changing "anger and resentment" to "frustration", while typing it up, and I have an excellent memory for words. I just find that is is a sad commentary on the mindset of most sufferers.

   Sure, occasionally I'll pitch a fit when something goes to heck because of my migraines, but that's frustration, not anger, and certainly not resentment. What am I to resent? The migraines are a part of who and what I am. To resent them would be to resent myself, and yes, I've tried. It's a singularly unhealthy mindset, and I've spent years in therapy trying to undo the damage that approximately 14 months did to me back in 'o5-'o6.

  I think if we (the Migraine Community) focused on more positive phrasing, or at least less negative seeming, maybe we as a whole could come to accept the pain a bit more, and then be able to move forward with our lives.


Quantum in me fuit,
Gretchen

Wednesday, June 26, 2013

Men in Black: Migraine Neuralizer (Day 26)

How do you cope with the way Migraine/Headache Disorders can impact your memory?

   Irony; oh how you sting! Allow me to explain:

   No sooner had I typed the prompt and began to think about how to answer it, but my phone rang. And, I learned, somehow back on May 25, I didn't complete a PayPal order the way that I thought that I had, and thus the product never arrived. What's even more slightly embarrassing is when I had been asked about getting the package (I supposedly had ordered three that day) I said I'd gotten it. I counted one box twice.
   Whoops. And now I'm suppose to be answering how I deal with a memory that's such that things like this can easily happen.

   I laugh. I mean, sure I'm embarrassed right now, because I really was proud of how well I was doing at juggling two things at once, and apparently I'm not doing as well as I thought. But there's no point in getting angry, because there's nothing that I can do about it, and it's not my "fault". I know that I had a migraine spike the day that I was doing the ordering, and now here's the fallout. It's just something I have to deal with.
   I've corrected the forgotten payment, and everything's as good as it can be. It'll just be a month late, that's all.

*shakes head*

   What a perfectly timed snafu.

Quantum in me fuit,
Gretchen

Tuesday, June 25, 2013

Lincoln: (Day 25)

Who's your favorite historical character that lived with Migraine or another Headache Disorder?

   I think that at the moment, one of the historical people who suffered from migraines I identify most with the author, Lewis Carroll.

   This is not only because of the migraines, including the somewhat less well known, yet aptly named, "Alice in Wonderland Syndrome", but because he also lost consciousness on occasion. (Source) And while at the time, this was thought to be a rare form of epilepsy, something I fortunately do not suffer, I used to lose consciousness due to my migraines, and the lack of control over one's surroundings that happens in such a situation is something I understand quite well. Having three conditions in common with the great man, plus a shared interest/profession makes me interested in Carroll's migraine history.

   In addition, the way that Carroll thought, most likely while suffering a migraine, is very familiar and comforting to me. I remember reading his complete works when I was eleven or twelve and my migraines beginning to majorly impede on my life. Poems like "You are Old Father William", or the more famous "Jabberwocky" seemed to make perfect sense to me. It didn't really hit me that the words were made up and supposed to be nonsensical any more than, say, Dr. Seuss's books. It was really all one and the same to me. I could create my own ideas of what the mome raths from "Jabberwocky" were like.

    I didn't know that micro/macropsia was called "Alice in Wonderland Syndrome" until long after I'd begun to experience the sensations. I thought it was just my brain being odd, which, in a way, it is. But at least it's not being uniquely odd for a change. The sudden shrinking/growing sensations are some of the most disconcerting things I've ever had to deal with. It's about a million times worse than going quickly down in an elevator with your eyes closed.

As for the loss of consciousness, mine has been diagnosed as vasovagal syncope, which is an almost meaningless diagnosis. "You pass out when your veins dilate" said in Latin is much more impressive, however, so they went with that. There was a question of my having epilepsy long before they considered the problem being my heart, however, and I had a multitude of tests to prove that I wasn't an epileptic. These tests, naturally, weren't around in Carroll's time, so the rudimentary diagnosis is all that we'll ever really have. But still, it's an interesting similarity.


Quantum in me fuit,
Gretchen

Monday, June 24, 2013

Risky Business: (Day 24)

Each time you try a new treatment, you take a risk. How do you initiate a discussion with your doctor  so you can make an educated decision about trying it as a team.

   Wow... I keep sensing such a feeling of distrust in these questions whenever it comes to speaking to your doctor. I don't know if I'm phenomenally blessed, I suppose I must be, but I've never really found it to be much of a need to "initiate a discussion"; it just... happens.

   My psychologist and neurologist, the two doctors that deal with the prescription meds that can affect my migraines always consult not only each other every time that there's a med change being discussed, but they include me in the discussion. Maybe this is because I have been seeing each of them for close to ten years, and they've watched me grow up and learn the basics that I, as a patient, ought to be concerned with through osmosis basically. Monkey see, monkey do, and all that.

   I'm also a forceful enough personality that if I don't understand something, I'm not going to passively fade off into the sunset when it comes to my health. I'll bulldog the issue and just keep harping on it until I get an answer with which I'm satisfied.

Nobody can take care of me better than me, after all.

Quantum in me fuit,
Gretchen

Sunday, June 23, 2013

Bruce Almighty (Day 23)

How does spirituality and/or religion help you cope?

    I must preface this with the fact that I'm not terribly religious. I know enough of many organized religions to pick and choose bits that seem to resonate, and come up with a conglomeration of my own creation which is incredibly difficult to actually describe adequately to another. Suffice to say, I'm a spiritual humanist.

   From Buddhism comes the idea that All is suffering, and that the path to enlightenment is through letting go of the material world. This is almost exactly my philosophy regarding my life with migraines. I'm going to suffer pain. I know and accept this as fact. There's not a time in my life that I can recall not having migraine pain, so I don't particularly object on personal basis but rather on principle.
   In order to learn to survive with my chronic migraine, I've just learned to detach from the reality of the pain, and focus on something, anything in my body that is pleasant, neutral, or even just less negative than my head. Then I'm able to gain a bit of functionality back.

   From Hinduism, there is (Om), the primal sound. It's almost as if, at the basis, there is a common element of understanding for all. In my life, it's pain (migraine), and, for whatever reason, I tend to gravitate towards people who have also heard the meaning of pain. Ganesh, the Remover of Obstacles is also special to me, as I can think that there's some being out there pulling for me in a way my friends and family can't.  

   The pagan beliefs which revolve with the sun and moon, with the ebb and flow of power also makes a lot of sense, as the patterns of my migraine pain changes with the changing of the seasons and amount of daylight. 

   There are many others, but these are three examples of the kinds of things that help me cope.

Quantum in me fuit,
Gretchen

Saturday, June 22, 2013

Walk the Line: (Day 22)

How do you balance the need to avoid your Migraine/Headache Disorder triggers with equally powerful need to enjoy the things that give your life meaning?

   How sad I find this question; to think that I have to avoid my migraine triggers in order to give my life meaning. I'm in one of my trigger areas right now, but that's not stopping me from finding meaning in my life at this moment. On the contrary, strength rises in the face of adversity. That isn't to say that I go out seeking my triggers, be they food, occupational, or physical, but if I happen to run into one of them, I take the pain that comes and keep going forward as best that I can.

   Take right now for an example; it's 4:45 AM, I've been awake for close to three and a half hours already today. Sleep deprivation is a huge trigger for me, and I'm not supposed to take naps during the day if it can possibly be avoided. So am I possibly triggering myself, yes. Not on purpose, I just awoke! and that was that this morning. But while I'm being sleep deprived, I'm getting my blog written and ready to publish. Writing down my experiences and sharing what I know is one of the ways I give my life meaning.

   Going at this question another way would end up with the same result of me not letting the one really get me down. Since I've had migraines for as long as I can remember, and the same migraine since fall of 'o1, I never really got the "Before" lifestyle picture. That's one thing for which I'm profoundly grateful. I don't know a life without migraines, or how I even would live one, and thus it's not a Big Deal for me to have the pain come along and want to play as well, no matter how ill timed it might seem to the rest. I take it as the pain comes and be grateful for what I can get.

Quantum in me fuit,
Gretchen

Friday, June 21, 2013

Oblivion (Day 21)

   Somewhere in between when I was 17 and around age 20, I lived. Or at least, I existed. I honestly have very vague recollections of that period of my life. I call them the "Missing Years"; years when I lived in a pain induced depressive fugue. It's really quite scary, actually, to think of a 2-3 year blank in my memory, but that's how it is.

   I know that I did some of the basic things: go to see my neurologist ever 6 weeks, various therapists, a migraine clinic, a sleep doctor, acupuncturist, etc. But I really can't tell you much of what was going on. I was the pain, and pain is crippling; ergo I was crippled. I could sleep up to twenty hours in a day, pass out up to ten times, or just plain cease to function and try to shut out the world. I did a pretty good job of it too.

   The couch in my den, on which I'd always lie during the day, and sleep on half the nights, ended up having the springs mold to my curled up, fetal positioned body. I found it exceedingly comfortable, and I could just nestle down there for hours at a time, but my mom, when she came in to sit with me and try to get me to act more engaged, found it dreadfully uncomfortable. Finally, it got to the point that we had to get rid of that couch it was so uncomfortable to everybody else.
   The getting rid of the couch, I think, was also a silent statement that I was too going to get out of my fugue, if it was the last thing that I did. Because if I hadn't woken up, it might have been.

  Apparently, unknown to me, although I might well have been in the room at the time this was said, near the end of the Missing Years, I was given a prognosis of two years to live at my then current lifestyle before I finished shutting down my organs by putting my body to sleep. (I only found out about this prognosis years later.)

   And so, I was metaphorically dragged kicking and screaming from my sleepy oblivion, back into reality, and then on my way to learning how to deal with the chronic pain in a more healthy manner. But the Missing Years remain a blank in my memory, and that now saddens me more than anything else.

Quantum in me fuit,
Gretchen

Thursday, June 20, 2013

Star Trek: Generations (Day 20)

What role do Migraine/Headache Disorders play in your family history? Do others live with it? Does this make a difference in how you talk about it?

   My family is laced with migraines, but nobody has the same kind as I. My grandfather had the migraine with aura, which is similar to what I had as a kid, but his were the kind that went away after an hour's nap. He could also throw up and feel better that way, which is something I never do. He also out grew his.
   My mom, it turns out, has had both episodic abdominal migraines as well as Alice in Wonderland Syndrome, especially as a child. Now, if she's really quite stressed, she might get a visual migraine. But she never gets the head pain.
   Nobody else has chronic migraine, though.

   I don't think that my mom's having some personal migraine experiences has made that much of a difference in how we talk about my migraines. Instead, we use the frame of reference that has been built with my experiences, and her watching me closely. After all, her experiences were nothing like mine, and thus it wouldn't make sense to compare apples to kumquats.

Quantum in me fuit,
Gretchen

Wednesday, June 19, 2013

Evita: Don't Cry for Me Argentina (Day 19)

We don't want to be pitied, but we aren't always open about telling people how they can help us. How would you like to be helped?

   I hate being pitied, as I feel that it cheapens what I go through. The "Poor Baby" response to my life with chronic migraine really gets on my nerves. However, that doesn't mean that I'm adverse to people's understanding.

Understanding my limitations;
Understanding my unreliability;
Understanding that I'm doing my best;
etc.

  I need understanding for how I've learned to deal with my pain. I often feel that when I say that I've accepted the pain, people misconstrue me, or can't fathom the idea, and end up assuming that I've surrendered to the pain and am going to let it rule my life. On the contrary, that is exactly what I'm not doing.
   By accepting the pain, I'm able to breathe through it and move on to do what I can. When I didn't accept the pain, it was then that I was frozen and couldn't progress.

   So what do I want in order to be helped? To be granted understanding and the patience of others. If I have those, then I will not be as hyper aware and feeling the need to justify every action. Instead, I can just focus on doing my best, whatever that looks like in that moment.


Quantum in me fuit,
Gretchen

Tuesday, June 18, 2013

Die Hard: "Now I have a machine gun. Ho, ho, ho." (Day 18)

Devise a make-believe weapon to blast Migraine/Headache Disorders out of your life.

   I don't think that I want a weapon that would blast my migraines away. I mean, it sounds good and all for most people, in the abstract, but for me it sounds very wrong.

   First off, I wouldn't want a weapon, I'd want a device. A weapon is too violent for me to want to use on myself. I instantly started to equate it with SI, even though that obviously is exactly the opposite in this case. Weapons can be used to protect or defend, and I get that, but in this case, the weapon would be an aggressor, and I don't want anything like that associated with my head.
   Secondly, I wouldn't want to blast my migraines away. Violence is a trigger for me, not only psychologically, but it will also manifest itself in a headache/migraine. So to use a for of obliteration that is very violent and triggering to get rid of my migraines seems rather counter productive, perhaps?

    So what would I like in the form of a device to gently get rid of the migraines? I think I'd like some kind of special cloth-like device, which I could use to wipe my brow, or the back of my head, and have it absorb and wick away the pain. Then the device could somehow take that painful feeling and use it as energy to absorb even more pain the next time I used it.

Quantum in me fuit,
Gretchen

Monday, June 17, 2013

Mission Impossible (Day 17)

   "Your mission, Reader, should you choose to accept it, is to spend no more than 32 "spoons" in one, 24 hour period, and accomplish as many of the outlined tasks, including all 5 bold tasks for a successful mission. 
   "As ever, remember that a "spoon" is simply a unit of energy that it takes to complete a task.  Each line of the list of tasks below will use one spoon today. On other days it might either take more than one spoon per line, or you might be able to do an entire task with only one spoon.  
   "If you use more than 32 spoons your mission will abort and your only chance for survival is to go to bed. Although some days it is possible to "borrow" spoons from the next day, there are two problems with that. One is that you run the risk of crashing mid-task and losing all escape-to-bed options, but rather wind up in the ER. The other is that we might have another, more difficult mission for you in the immediate future, and you would be at a disadvantage by having even fewer spoons than you originally would have been allotted for that day. 
   "Today you are a level 6 migraine, on the usual pain scale of 1 - 10. This is a "good" day for you, where you might be able to accomplish some of the basic tasks outlined below. 
    "This message will self-destruct, but we hope you will not."



List of Ten Tasks to be Done
It is expected the average American sleep time of 8 hours a night, and you do not spend spoons in your sleep today. Accomplish the outlined tasks, including all 5 Bold tasks for a successful mission.

1. Wake
    A. Get out of bed
         i. Make bed
    B. Get dressed
    C. Take pills
         i. Have one get stuck halfway down
2. Decide what to eat
     A. Fix breakfast
     B. Eat breakfast
          i. Clean up
     D. Put 'milk' on the grocery list
3. Gather your things and list of 5 items
    A. Find your missing keys
      i. Lock the door
   B. Drive to the store
      i. Do your shopping
        a. Store items away
     ii. Drive home
         a. Put away items
4. Realize you didn't get milk
    A. Berate yourself for 5 minutes
5. Decide on lunch
    A. Fix lunch
    B. Eat lunch
         i. Clean up
6. Boot up computer
    A. Log onto email
7. Remember you have a 2 hour appointment
   A. Gather your things
   B. Drive to appointment
        i. First hour
   C. Run into a problem
       ii. Hit the hour and a half mark
       iii. Make it through all two hours
   D. Drive home
8. Decide on dinner
    A. Fix dinner
    B. Eat dinner
    C. Clean up
9. Family friend calls
    A. They've been doing poorly
        i. Lots of drama in their life
    B. Debate being honest about your life
        i. Stretch tiny things to sound positive
       ii. Feel guilty for misleading them
10. Go to bed late



Sunday, June 16, 2013

Riverdance: (Day 16)

Have you found a way to work exercise or movement into your life with Migraine/Headache Disorder? What is it?

   I've found a way to get myself to move, even on the worst days. I drink. My water bottle only holds about a liter, and I'm supposed to drink at least three full bottles a day. So I have to get up and refill my water bottle from time to time.

   But I don't just get up three times a day, I'll get up and refill my water bottle partway with ice water to keep the temperature of the water cool. I have a hang up where I can't drink warm water without feeling a bit like the water's going to waste as it doesn't feel refreshing. That and I'm heat sensitive, so cold water feels better.

   This means that I get up 8-10 times just to fill my water bottle, depending on the day. And naturally, if I'm drinking that much water, there's going to be more times that I have to get up because of my bladder. So even on the worst day, I'm now up several times, even if for just a minute or two, because it not only is healthy, but because it's become a calming ritual.

   Who would have thought when Mom threatened to make me pay the next doctor bill that told me to drink more, that I'd start drinking enough, and in such a way that it has become a source of reliable, yet reasonable movement even on the days when moving is the last thing I want to do? But it has, and for that I am grateful.

Quantum in me fuit,
Gretchen

Saturday, June 15, 2013

Harry Potter: (Day 15)

Write and name a spell for getting rid of a Migraine/Headache attack.

Ablstretzio; [A-bul-STRET-zee-O] with the wand waved in an ampersand sign, enables the witch or wizard casting the spell to make their pain an abstract fact. This allows the migraine/headache to be more easily examined objectively as a fact, rather than a sensation. The witch or wizard's own pain, which is usually shelved off to one side, can then be the center focus.

If the migraine/headache pain is not the center of attention, then it is perfectly possible for the minute discomfort to be maneuvered around and the witch or wizard's life can resume almost as exactly as it was prior to the attack.

Quantum in me fuit,
Gretchen

Friday, June 14, 2013

Letters to Julia: (Day 14)

Write a thank you note to someone who has helped you.

Morning Karen,
   I was one of the patients you were a nurse for on the migraine ward just before your retirement. I doubt that I showed my appreciation at the time, partly because I didn't know how much it was going to help, but I just really wanted to say "thank you" for something you told me one morning. You were coming in, turning on dim lights to help wake us on morning before the team of doctors made their early morning rounds. 

   When you woke me, and got me to be slightly lucid, you told me, "Morning." I replied with, "good morning," and you stopped me right there and looked me in the eyes and told me it was "morning," not "good morning," as for many, it wasn't going to be a good morning. I was struck by this idea that I could change my greeting to suit the situation more than I had previously known was possible. 

    To this day, if I'm greeting somebody I can't judge quickly, or who if I'm having issues myself, I will use the greeting of "'Morning," and leave off the positive adjective. It's a way to be honest, as well as courteous, as you were in the migraine ward, to acknowledge that the day ahead might not be a good one, but that the person is worth a socially acceptable greeting. That in and of itself can be huge; being treated as any other individual, no matter how severely we are actually suffering.

   Thank you so much for giving me my most used morning greeting, one that I hope helps others, subliminally if nothing else, as it helped me. gain a reprieve from the expectation that all is well. That meant a lot when I was on the ward, and it continues to help me all these years later. 

   Thank you and may I be the first to say, "Morning" to you today. 

    - Gretchen

Thursday, June 13, 2013

Sophie's Choice: (Day 13)

What are the toughest treatment choices you face when balancing Migraine/Headache Disorders with other health conditions?

   I honestly can't think of such a time, and that's slightly embarrassing.  The only thing I ca think of that might count is something they took me off for safety reasons. But that was an individual problem.

   I do have to be careful when I get manic and start moving furniture, either in the den or my bedroom, that I don't overexert myself and cause a migraine spike from that. But sometimes, even if I don't start moving furniture but instead control the mania of my biploar in another way, I can burn out and go down, into a migraine.

   I've had to learn to, when manic, take a step back and analytically review my desires and actions and see if they are something that I would usually do, or if they're something that normally I would find odd or out of place. The problem with my mania is even if I don't do the physical exertion, my mental exertion can be extreme and cause me to burn out and default into a migraine.

   On the other hand, the two or three PRN prescriptions I have to help with the mania all can knock me out enough that I can just go to sleep, which, while wonderful for controlling my activity, it can also "freeze" me in a shut down mode, and then I have a very hard time getting out and not falling into a depressive based mindset, in which I usually default, once again, to a migraine.

   So, I suppose that controlling my bi-polar as needed for attacks is very hard and the options need to be weighed. It's almost as bad as already being in excruciating pain and not being sure if I can take a painkiller.

Quantum in me fuit,
Gretchen  

Wednesday, June 12, 2013

The Box: You are the experiment: (Day 12)

What situation in your Migraine/Headache Disorders treatment has made you feel most like a guinea pig or lab rat?

   Is there a part that hasn't? I think I need to be notified of that, instead of listing the parts that have made me feel as such. I'm perfectly content with this being the perpetual guinea pig, and I'll tell you why. It is the guinea pig who is on the forefront of research; the lab rat is the one that will lead the way for the tame mice to follow later.

   I am not a common, standard, episodic migraine patient. I've had migraines practically since birth, and they've been effecting me and my quality of life for almost just about as long. Since I'm not the standard, episodic migraine patient, or even a semi-normal chronic migraine patient, it would make sense that my treatment options would not be formulaic according to standard proceedings and symptoms. Because of this, I would be worried if I were not treated as something of an experiment.

My mom, when I was younger and would go into one of my doctors' offices with a new presenting symptom would say that if they ever completely figured out what was wrong with me, they ought to write a medical article on it. And if that was the way I was being viewed by those who were watching, it would make sense that, even when I wasn't aware of it, I was a guinea pig.

I had my heart checked for a PFO before it was officially acknowledged by the FDA as a recognized migraine trigger. I have taken medicine after medicine, basically as soon as they were approved for the original condition, whatever that was, if it had a side effect of helping migraine to see if it would help me.

I truly don't mind any of this cutting edge experimentation. It does no harm, and can do a fair amount of good.

Quantum in me fuit,
Gretchen

Tuesday, June 11, 2013

Twilight: (Day 11)

What power of a vampire or werewolf would you like to have to cope with Migraine or another Headache Disorder?

Wow... interesting question. Speaking as one of the few who haven't really been exposed to the Twilight series, I can't vouch for what those vampires or werewolves(?) can do, but I believe I remember from what my friends were talking about when they first read the books (long before the movies) was that the lead vampire could go out in the sun, but he sparkled when he did so.

This would be a nice power to have, to be able to go out into the sun with little fear of what's going to happen to you. I'm painfully pale from staying indoors with the pain, and thus I burn very easily. I'm also photophobic, so I have to wear sunglasses if I'm outside, even in a cloudy day's half-light.  I would love to be able to just protect myself from the sun and just be able to go outside on good days without having to make sure that I have all kinds of paraphernalia with me.

Quantum in me fuit,
Gretchen

Monday, June 10, 2013

Ocean's Eleven: (Day 10)

Who's part of your Migraine/Headache Disorders care team? What essential rolls still need to be filled?

I've got quite the team already fleshed out as I've been building onto it for years. As of right now I have, filtered for migraine related issues only:

Neurologist: Dr B
Psychologist: Dr G
Cardiologist: Dr N
Orthodontist: Dr H
Jaw Specialist: Dr S
Surgeon: Dr J
S.E. Therapist: B.J.H.
Massage Therapist: C.C.
as well as
Cheerleader/s: Mom, my sister, G.M., A.A., all my online friends, various other family, and the above doctors and therapists.

Basically the only roll, and I'm not sure how essential it is, or if it falls under the category of Cheerleaders, is a Boyfriend. But I'm perfectly content with or without one, it doesn't seem to make too terribly much of a difference, at this stage in my life at any rate, so I'm content to go where the winds take me. The right candidate will appear if/when appropriate.

Quantum in me fuit,
Gretchen

Sunday, June 9, 2013

Mama Mia: Money Money Money (Day 9)

How does living with Migraine or another Headache Disorder impact your financial situation?

   I'm not sure how to answer this. I'm on SSI as I can't work because of my migraines, but at the same time, I'm not on SSDI (official Disability) because I never could work. I was disabled before I could ever get a job to pay into the system. I consider myself extremely fortunate (in a perverted way) that I'm considered qualified for SSI, as it does give me money to pay rent, my bills and incidentals, and some of my medical expenses.

   However, there's a frustrating in that I'm basically unable to earn any significant money if I want to keep my benefits. That means that I can't collect profits for selling My Secret, even though it was written long before I started to receive SSI. Mind you, it hasn't sold anywhere near enough copies to make that a real issue, but it was something with which I seriously had to consider how to deal. Thus it was even more wonderful that I could send all proceeds to the Migraine Research Foundation, without me ever seeing a single red cent of the profits.

Quantum in me fuit,
Gretchen

Saturday, June 8, 2013

Little Shop of Horrors: "Feed Me, Seymour": (Day 8)

What comfort foods do you reach for when you have a Migraine or Headache attack?

The kind of foods that I gravitate towards aren't exactly a food group, or kind of food, but rather, well, I don't know how to say it except a temperature range. I gravitate towards the cool to cold foods. I tend to feel both hot internally, and hot to the touch, when the pain gets worse, so eating something that's cold, or even drinking lots of ice water is comforting and calming.

If I have the spoons for something like making noodles, I'll drain the water and run cold water over the pasta before I eat it. I really do like ice water as well. Every time my liter bottle gets even half empty, so many times a day, I always get ice water to fill up the bottle and that helps a little.

As for types of foods, I like frozen or refrigerated nuts, cold pasta, and some refrigerated apples and oranges.

Quantum in me fuit,
Gretchen

Friday, June 7, 2013

Pretty Woman: (Day 7)

What do you do to look good when you feel like crap?

I laughed out loud when I read this prompt because it became prevalent only in the last few years of my life. I have a friend who has a different disease, and has been recently having more bad days over the last, oh, two years. Especially unfortunately for her, she still has to go out among the general public and act like a living being even when she's in terrible pain and can't really function well. She also gets paler than a ghost and is understandably frustrated to look sick because of the amount of pain that she's in.

Enter YouTube. She started to watch makeup tutorials, got some supplies, and, voila! She looked "not dead" even on her really bad days.

I got jealous of her suddenly looking "healthy" all the time, not knowing what her secret was, and so she told me, and showed me the website she got her good quality, excellent price makeup from, such that I didn't have to leave the couch to go to a store. Over Skype, as we're long-distance friends, she taught me the highlights of what she'd learned, customizing it for her knowing that I've a casual appearance most days.

Now, when I feel particularly dreadful, I can just go to my little pouch of makeup essentials, and with a base, eyeliner, and lip gloss, suddenly feel much stronger. It's like putting on war paint for me. I don't necessarily care about looking ~pretty~, and most days leave it off; but if I need to feel pulled together, I now have an easily done option.

Quantum in me fuit,
Gretchen

Thursday, June 6, 2013

Premonitions: (Day 6)

Where would you like to see treatment options for Migraine & Headache Disorders go in the future?

That's easy: pediatric migraine awareness and treatment development. There's no question in my mind that there is a great need for a new kind of treatment option to be opened for the pediatric community. I will admit that I'm not completely up-to-date on my pediatric research and treatment information, but I can tell you that twenty years ago it was pitiful.

I have had migraines since at least early childhood, if not since birth. I truly suffered as a little kid, when people didn't believe that I could be having migraines. My poor pediatrician figured it out when I was in either First or Second grade, but what could he do? I would have been about 7 years old! There was so little known about what was going on with migraines at all, much less in the pediatric environment.

I'll never forget when I went to my first pediatric neurologist. I think I was ten or eleven. She put me on an old-fashioned antihistamine that had, through years of observation, been noted to help prevent waking with migraines. This was a huge relief, as most of my migraines at that stage began in my sleep, when I couldn't take the other pill (I forget what). My pediatrician had given me the pill to try and abort a migraine attack, but I was asleep and missed the window, so the antihistamine was awesome.

Finally I would mature enough physically so that I could start taking prescribed adult medications for my migraines, on low doses. But for so many years, I was basically just stuck in hover mode. My migraines had outgrown Children's Tylenol, but my body hadn't.

So, when I published My Secret, I made sure that all the proceeds go to the Migraine Research Foundation to help fund research for migraine treatment among children. One in five school aged children will experience migraine this year, and we owe it to them to make sure that they get the best help and care possible.

Quantum in me fuit,
Gretchen

Wednesday, June 5, 2013

Carousel: You'll Never Walk Alone: (Day 5)

   Confession: I have never seen Carousel to the best of my memory, so I cheated and looked it up to get an idea of what to write, as today is prompt-less.

   I was never a social butterfly growing up. For one thing, I'm an introvert, and secondly, my personality is often found to be abrasive or, more often, "intense". As a result, while I might have had some broad acquaintances, I only had a very few select, "real" (bad term, but I can't think of a better one) friends. These friends were ones that I could count on to put up with me when I was down with a migraine for weeks on end. 
   Well, then the number of "real" friends plummeted in some high school drama, and at the same time, I was becoming more and more incapacitated from my migraines. My ring of broad acquaintances were also beginning to distance themselves, as we were seeing each other less and less. The the Boom was lowered, and I was gently forced out of school in the Spring semester of my junior year. There went my circle of acquaintances, all of whom I knew through school. 

   I went into a huge funk as the pain from my migraines skyrocketed. I didn't do much anything, and I lost basically all contact with all my friends as I spent so much time asleep, hiding from the pain, or curled up in a puddle of pain on the couch that I had no spoons to maintain friendships. 
   During this time, I began, when I could, writing poetry as a way of trying to get some of my emotions out. One poem of mine came immediately to mind when I read that "You'll Never Walk Alone" was sung when Billy in the movie was killed. 

Chain Link

I walk down the sidewalk
Running my fingers
Along the chain link fence
That separates me from
The rest of humanity.
As I meander slowly
Down the twisting path
My fingers feel the space
And void that make up
The boundary of my life.
Taking my hand from
The fence as I turn back
I feel a tingling numbness
That travels up my arm
And into my heart.
It sits there in my core
Humming to itself
As I pace back up
To where I have been
So many times before.
The potential energy
Slowly calms my thoughts
Until I reach a state of
Uncaring awareness.
This state brings forth
A gate in the fence
Where none had been
When I had traveled
This way previously.
I study the gate with
A sense of curiosity
As if I were the tarot’s
Wise Fool who cares for
Nothing but knowledge.
I open the gate slowly
And stare at what lies
Beyond what I have known
For all of my life.
It is intriguing to see things
Without the bars of my fence
But I know instinctually 
That freedom is not always
What it seems.
I turn and begin to walk
Down my path once more
Leaving the gate of possibility
Still open behind me as
I want only to feel
My fingers running along
The chain link fence.
Space and void work together
To bring safety and the state
Of uncaring awareness
That settles in my heart.
- G. Rautman
 02/2009

   The chain link fence, of course, was my migraines, and the numbing social isolation it was bringing to my life. Chain Link was written when I was beginning to stabilize emotionally and come to terms with the migraines and isolation that I had in my life. I was learning how to become functional again after being a puddle of pain for close to three years. It was taking a lot of work, and it numbed my brain on occasion, but I was fighting for it. Still, I knew I wasn't ready to go through the gate and enter the unprotected world just yet. I was still alone. 
   But then something really interesting happened - I found out that the chain link fence was only in my mind, but, at the same time, almost completely literal.

   I did have a gate I could pass through and go out into the rest of the world of the world. It was called my laptop's screen. And there, I was free to be myself. My migraines were there, yes, but that wasn't the whole persona I presented. I went online and interacted with other users when I was in a good place, and when the pain was really bad, I could either just log off and not be observed, or, more importantly, get support, not condescension or pity. It was amazing - I had friends!

   In fact, I have been building a steady base of "real" friends, who will, and have, been there for me through thick and thin, for years. The fact that I've never laid eyes on most of them is immaterial, because it's their minds and behaviors that show and tell the true story. 
   My friends are all over the world. My best friend lives in Canada, and I have friends in Australia. Most of my friends? I don't even know where their bodies are, because it doesn't matter. Just as it doesn't matter where mine is. I can be at my desk or flat on the couch, and still have friends treat me equally.

So now, just as at the graduation, I can look back at the song and see all the hope that was there, and use it for encouragement to keep trying. But most importantly, it reminds me that the fence and gate are only figments of my imagination, and I can free myself whenever I choose. There will be friends on the other side to welcome me when I pass through.

Quantum in me fuit,
Gretchen

Tuesday, June 4, 2013

Finding Nemo: "Just keep swimming": (Day 4)

How do you keep going in life when Migraine or another Headache Disorder deals you a difficult set back?

   When I first became seriously disabled and I was forced out of school, I just, well, didn't deal. I shut down. I went into a total depressive funk and proceeded to basically sleep for two years straight to try and escape the pain, and the situation. It didn't work. I succeeded in making myself more sensitive to the pain, not less, as I would be incoherent for up to 20 hours a day, but when I was awake, I didn't have time to get used to the pain. So it I was basically either asleep and floating, or in awake and sinking.  So that didn't work.

   Then they made me wake up, and I didn't have a choice except to learn how to swim. I learned that, whether physically, emotionally, or mentally, I had to keep pushing the water in my face past me and get through it. Yes, there would be more water the push against my face in a moment, but, after so many pushes, I "earned" a chance to float, to relax, to pop back up and breathe. But buoyancy has a limited number of virtues, and back under the water I'd go, pushing one obstacle after another out of my path.

     Because if you don't, you'll just go nowhere.

Quantum in me fuit,
Gretchen

Monday, June 3, 2013

The Hunger Games: "Happy Hunger Games, and may the odds be ever in your favor": (Day 3)

What healthy habits have you adopted to put the odds of better Migraine and Headache Disorders management in your favor?

   Let it first be said that the odds were not always in my favor. I wasn't treating my body as well as I should have, as I was in a major depressive two year long episode because the migraine pain was that bad.
   One thing that was told to me, I remember, by almost every health person I saw, every time I saw them, was that I needed to drink more water. This was difficult when I was sleeping upwards of twenty hours a day. But finally, after one such scolding, my mom took me aside and told me that if she heard that I needed to drink more water one more time, I'd be paying that visit's bill myself.
  Lo, I began to drink!  I now am to the point that if I don't drink at least two liters of water a day, I feel terribly dehydrated and slightly headachy from the lack of intake.


   Another thing that I've started doing to take better care of my health is eating more regularly, and more equally sized meals. It used to be, during those same two terrible years, that I would honestly forget to eat lunch. I might have an afternoon snack, but not a regular lunch. This was terrible for my blood sugar levels in general, as it would be for anybody, and thus when I got myself in gear to take better care of myself, I started to try and remember to eat three times a day, and have only one afternoon snack, and only if needed to keep the headache part of the migraine at a more even level. 
   I try to eat more proteins when I do need a snack, as those will last longer in my system, as well as keep me feeling full longer. I've also learned to think ahead of time and carry a protein bar with me in my purse, so that if a meal gets seriously delayed for whatever reason, I'm not at the mercy of circumstances, but can administer, well, emergency food, as needed.

Quantum in me fuit,
Gretchen

Sunday, June 2, 2013

X-Men: Migraine & Headache Disorder Super Heroes (Day 2)

Who in your life goes above and beyond the call of duty, and how?

    Wow... this is hard. It truly is; I think I'd have an easier time coming up with a list of those who have not. However, here are some of the most notable:

   My mother is probably at the top of the list. When she had me, she had no idea what she was getting herself into, although she did learn quickly when I screamed for the first year. However, she was to be commended (and was told this) that I survived that first year, and I've survived 24.5 years beyond that. She is my rock. Since I'm not allowed to drive, it's usually Mom who sometimes ends up taking me to my numerous doctor appointments.
   She is so understanding and helpful during spikes. She's been there all along, and so is the best prepared to help me deal with the extreme pain days, coaching me to breathe, how to distract myself when I get too deep in the pain, and then will back off when it's time to just wait it out. That must be the hardest thing for a mother to do; to back off and just watch her child suffer. But she does it well because she knows it's what's to be done.


   My team of doctors that I've pulled together are another group who just continually astound me with their willingness, and, it's not quite the right word, but enthusiasm for helping me and thinking of my case and what can be done. It's quite impressive, especially, how well my neurologist Dr B and my psychologist Dr G work together. Dr G will sometimes call Dr B during an appointment if there's a possible medicine change in the works. They both understand that migraine and psych meds interact with each other, or can be the same chemical, just used differently, and thus are always very careful to check with each other. Apparently they also talk about me and my migraines when I'm not there, and if one has an idea, they'll call up the other.

   There are so many more; my sister, my friends online, my friends here closer to home, etc. that I really can't list them all. They're just all so loving and supporting. It's like I truly am at the Academy for Extraordinary Children.

Quantum in me fuit,
Gretchen

Saturday, June 1, 2013

Phantom of the Opera (Day 1)

Prompt: What do you hide behind your Migraine/Headache Disorders mask? What do you let people see?

This is an interesting question with which to open the Migraine Headache Awareness Month blog challenge. I wrote a poem in 2004 about what I'd let people see of my life.


It's not the best poem, but it expressed the way that I felt at the time. I needed to keep things under wraps. Three years earlier, I had done an art project with a similar message; Don't Let Them See. I made and fired half of a clay mask. Then, for the other half of the face, I molded the face, but left it unfired and malleable. In hindsight, I think I worried my teacher when I explained that the fired part was Me, and that the other half what what I presented to the world, changing to fit the situation and person/individuals I was around. But it was true. 

I'm not like that anymore, or at least, not for the most part. Sure I keep my pain number quiet most times, but if asked directly, I'll tell the truth. I don't hide my migraines though, and that's the part that I'm trying to get at. I've tried denying the pain, and it backfired. So now, I'm using the migraines that I feel to try and help others if not feel better, at least not feel as alone and scared as I felt. 

Witness this month's upcoming set of blogs. I'm not going to be hiding behind a polite mask of stoicism. I'm going to be honest about what I feel, while keeping it from being dramatic and obsessive. It can be a delicate balance some days, the truth that isn't dramatic, especially when life is drama filled, but it's for the best for the reader. 

I hope that you'll stick around to read the rest of the month's blogs!

Quantum in me fuit,
Gretchen


Sunday, May 19, 2013

re: Botox: the last post?

I just realized that I never posted the final chapter in the Botox Fiasco Saga:

A month after my second round of Botox injections, when I had the negative reaction, my injection sites were still burning like acid at a 8-9/10. I had figured out how to function with the pain, as it was a physical pain, rather than a migraine pain.

I have a much higher tolerance of physical pain than I can have with migraine pain, I discovered. It even showed in my language, as when asked about the injection pain, I'd say, "...it's an 8/10." However, when I am asked about my migraine pain, I say, "I'm a 7/10," or whatever number. I apparently identify with/as the migraine pain more than any other kind of pain, even be it in my head.

But anyway, the injection pain was still very draining, and I was lucky enough to have a regularly scheduled neurologist appointment a month after the injections, so I had a chance to talk to my neuro while everything was still fresh. Dr B didn't really have anything new to suggest, as I'd already tried Prednisone, Benadryl, and oxycodone. None worked.

Then, near the end of the appointment, as Dr B was going over my most recent med chart that I'd brought in, he suddenly snapped to the fact that I wasn't on Gabapentin. Apparently, to no great surprise, he'd lost track of all the changes that I've made to my medicine regimen in 6 months, and had forgotten that I'd gone off that prescription. Dr B quickly whipped out his script pad and wrote me for a (compared to before) medium dose of Gabapentin.

Since I started taking that Rx, my injection pain is down to a very acceptable 6-7/10, just like my migraine is most days. They're separate pains, and I can still tell the difference, but I can function so much better, and I don't get drained as quickly. I'm very pleased.

So, I guess the only thing left to really say on the subject is that I've had Botox officially struck off my list of potential future treatments. This has been decided by not just Dr B, but myself, Dr G, and basically anybody who knew about my reaction.

Quantum in me fuit,
Gretchen

Wednesday, April 10, 2013

Botox: 9 Days Later

It was nine days ago that I got my 19 injections of Botox for my second round of treatment. I find that  an amazingly long, and yet very short time, those nine days. But I'm getting ahead of myself. Last Monday, April 1st, I wrote a series of three blogs on how I'd had Botox back in December, what my story with it was like, and some phrases that were on my mind immediately after the injections. 

.   
The last phrases that I wrote down were: 
This is only my second treatment, but so far the differences between this and last time that I've noticed are:
  • not as dramatic a drop in pain
  • injection spots more tender
I hit "Publish" on those phrases roughly four hours after my injections. Well, these two snippets of thought were going to be all too important when the fifth hour arrived with hellish pain. Each injection point burned and hurt. None of this soreness or tenderness.  No, instead it was as if barbed wire dipped in acid was wrapped around my skull on the circumference where the injections had been, and the acid was burning a path through my pierced scalp and into my skull. 
This was no migraine, I knew that. I stayed up rather late, waiting for the burning pain to dissipate, and when, it didn't, tried to sleep it off. Only I couldn't lie my head down because that made me start to feel as if I were going to pass out from the pain. I was up the majority of the night, and finally managed to catch 1.5 hours of uncomfortable sleep near dawn. That was it though, and when I woke, the burning pain was a  high 9/10 even though my migraine was only a 7/10. 

When it became obvious on Tuesday that the burning wasn't going away, I called Dr B, my neurologist who had given me the Botox, and let him know that something was drastically wrong with my reaction. Dr B called back remarkably quickly, and called in an Rx for a five day course of prednisone to shock my body back into sync. Well, the prednisone didn't help one whit and so he took me off of it on Thursday after only my fourth dose of ten. We basically decided to see if the burning was a temporary negative reaction to the Botox, and that I would begin to see improvement later in the week, but I didn't. 

I've been at an 8/10 - 9/10 burning headache for nine days now. Mind you, this is not migraine pain that I'm talking about right now. This burning pain is very different than a migraine, and I know this. I still have my constant migraine going on at the same time as this new reactionary headache, but the migraine's mostly been behaving itself at a mid to high 7/10. 

On Sunday, I ended up in the ER because of the still-acidic burning points. I had Dr B's recommendation of asking for a shot of Toradol, and I did receive that in my IV cocktail that evening. I was positively delighted when the headache, after a fast injecting of Fentanyl, dropped to a 7/10. However, that much relief lasted only 16 hours, and then I was back at a 9/10 on Monday. 

For right now, our hopes of getting a hold of this negative reaction to the Botox lies with my taking the maximum does of OTC Benadryl. Dr B put me on this protocol last night, so I'll give it a few days and then see how I'm reacting and whether I need to call Dr B back and ask for more help. As of now, I'm attempting to reserve judgement and am trying to think of only the Sunshine and Skittles parts of life. 

Whatever the results I have with the Benadryl protocol, I'm 99.98% sure that this negative a reaction to the Botox injections means that it is now off the table for future treatments. There is no way that I want to repeat this acidic burning on my skull every three months, and, yes, I'll put down the Skittles long enough to admit that this depresses me greatly, as I had such a wonderfully positive reaction to the exact same injections in December. I hate to think that those days of 5/10 migraines will become a thing of the past again so soon.

But right now, I'll just let tomorrow take care of itself.

Skittles and Sunshine, Gretchen. Focus on the Skittles.