Hope at a High Price

And for many of us who can’t afford an $8000+ price tag,
that’s exactly what we’ll continue doing…and doing…and doing…

I’ve been following the CGRP research and trials with both hope and trepidation–hope because they’re the first drugs developed specifically for migraine prevention and have shown a great deal of promise, and trepidation because the projected price tag is astronomical for the average sufferer.

This article gives a lower projected price than many I’ve seen, but it’s still far beyond reach for many of us.
How long will we have hope extended with one hand and snatched away with the other? Many of us with chronic migraine are disabled and unemployed due to this terrible disease. We can’t afford many CURRENT treatments with a much lower price tag, much less this one.

What good is a highly promising medication if those who need it most can’t afford it?

– Selena

"Most people think of migraine as headaches. But head pain is commonly accompanied by severe, disabling symptoms like nausea, vomiting, dizziness and sensitivity to light, sounds and smells. The disease is far more widespread than realized: About 38 million Americans, or 12% of the population, have them, according to the non-profit Migraine Research Foundation. 

But treatment options are limited. Just a handful of drugs were developed specifically for migraine, though drugs for other conditions including blood pressure and epilepsy have been found to work, too. Still, there haven’t been any new drugs in development for some time, experts say. 

A promising new group of drugs, named after calcitonin gene-related peptide (CGRP), a neurotransmitter tied to migraine, has changed that. CGRP drugs are being developed both to prevent migraines before they happen, and to stop attacks once they occur. 

The former category is closest to being available for patients. About seven million patients would likely get the treatment, estimates Evercore ISI analyst Umer Raffat, with an $8 billion to $10 billion potential market size. 

Amgen Inc. AMGN, -1.03%  has already filed for approval, and Eli Lilly & Co. LLY, -0.21%  and Teva Pharmaceuticals Industries Ltd. TEVA, +1.61%  have plans for later this year.
Alder BioPharmaceuticals Inc. ALDR, -0.85% is also developing a preventive CGRP drug, and further research on the drug class is expected at the American Headache Society’s annual meeting, which began Thursday and runs through Sunday. 

But price and access remain a persistent question. Projections begin at about $8,500, concerning patients and headache experts alike. 

Dr. Lawrence Newman, director of the headache division at NYU Langone Medical Center and immediate past president of the American Headache Society, says that could add on to the “double whammy” of having migraines, which describes the symptoms and stigma patients face. 

“I’m concerned that the patient will again be exposed to that double whammy,” he said. “They’re made to suffer because of the disease they have and because the insurance company won’t allow them access to a potentially effective therapy.”

Read the full article at New migraine drugs have promise — and a $8,500 price tag.

#MigraineAndHeadacheDisorderAwarenessMonth #chronicmigraine #NotAHeadache #migrainenews #MHAM 

Migraine and The Trigger Trap

Image from migraine.com 

Weather and wine and chocolate, oh MY! Those terrible triggers!

(An important distinction here before we continue: triggers are NOT what "causes" migraine. Migraine is a disease that causes sensitivity to triggers (stimuli). If one does not have migraine disease, triggers don't affect them in this manner.)

Today I came across an interesting post from a friend's Facebook about a study on triggers:

 "Our study results show that people with migraine have great difficulty identifying their personal triggers and their suspicions may be overly influenced by beliefs popularized on the internet. Unfortunately, these misperceptions lead to a lower quality of life by people avoiding many things they love but without good scientific reason,” explains Alec Mian, CEO and founder of Curelator Inc. 

The first study examined trigger suspicions in users with episodic vs. chronic migraine and revealed an unexpected disconnect between suspicions and scientific reality. Both groups suspected virtually the same set of triggers. However, after using Curelator Headache, which scientifically determines true risk factor associations, significant differences in triggers were revealed between episodic vs. chronic participants."

The funny thing about this is that it ISN'T a new idea. I've been talking about how triggers may not actually be triggers since reading a few articles in this vein a few years ago, and how triggers are often cumulative, so the most recent events or substance that pushes an attack into existence may be the one blamed, when in fact it's a progression.

Take, for instance, this article from WebMD and one on a correlating study from TIME magazine, both from 2013:

 "In his clinical practice, he sees many patients whose quality of life suffers as a result of both their migraines and their efforts to avoid triggers that they believe will lead to attacks. In addition to light and exercise, other proposed triggers include stress, emotions, and certain foods. 

But there’s little evidence that any of these things really do trigger attacks, says Goadsby. He hopes that, in addition to the current study, there will be much more research on triggers. 

“There are tens of millions of people with migraine,” says Goadsby, “and all they have to go on are tales handed down about what triggers them.”
(WebMD) 

"You eat chocolate and you get a headache. Does that mean chocolate triggers the headache?” Silberstein asks. “What probably happens is the first symptom of your migraine attack is the desire to eat chocolate. Just like when you’re pregnant, you might want pickles or ice cream. That’s one end of the spectrum, where the desire to do something is part of the migraine attack, not the trigger.”  

Distinguishing between triggers and symptoms is challenging, not just for those who study migraines but for patients as well. Silberstein says there are some known triggers, such as certain odors, hunger, chemicals in alcohol and hormonal changes linked to menstruation, but that other factors may fall somewhere between an actual trigger and a symptom. How can patients tell? “Everybody with a migraine should try to find out what is triggering their attacks,” Olesen says. “When they have a suspicion, it would be a good idea to try and see if it induces an attack. In most cases, it’s probably not going to be true.”  

Both Olesen and Silberstein say there are a number of factors that determine whether these suspected triggers will actually lead to an attack. Patients likely have individual thresholds that vary from day to day and from environment to environment: some days your brain is less vulnerable to certain triggers, while on other days the conditions might be right for a migraine."
(TIME) 

The TIME article prompted me to test some of the things I'd previously thought were my triggers, one of which was pepperoni pizza--one of my all time favorite foods and something that is high on the list of things thought to contain classic triggers (aged cheeses and aged, dried, fermented, or smoked meats).
Guess what I found? It did NOT always set off an attack. The times it seemed to were usually times I was already in danger of one, pointing to the cumulative factor, or that it wasn't one.

Now, triggers CAN change over time; as my attacks progressed to chronic, so did the things that could set them off. But many of those were environmental or cumulative. Some were unavoidable, like weather--scientists don't know why weather/barometric pressure are likely to set off attacks for so many of us, but it has shown that it does. Others were fragrances like perfumes or cleaning products (bleach is the number one).

When I became daily chronic, triggers more or less went out the window. Nothing actually set off an attack as mine was 24/7, 365, but some things could certainly worsen my pain/symptomatic level. Weather is still the most reliable one, but fluorescent lighting is up there, along with odors and certain chemicals. Too much exercise can exacerbate it, but carefully paced exercise or exertion may or may not. I seem to have a stunning zero food or drink triggers...and I suspect some of us may have less of them than we think.

One of my friends is entirely triggered by environmental allergies ; she's literally allergic to the environment.
I know allergens in the environment affect mine adversely.

The takeaway here: triggers may not be what we've thought they were, either in what we think they are or in their influence on migraine. This may not change how you see them, but it's worth following.  

Migraine Can Be Deadly. (Yes, Really.)

On the last day of Mental Health Awareness Month, I'd like to highlight the importance of mental health in conjunction with chronic pain/ illness/migraine.

I can say that having found the migraine community shortly after this young woman's death, I was profoundly and deeply affected by Melissa's story.
Having progressed to daily chronic myself a relatively short time before, I was struggling to deal with the pain, the stigma, and still searching for answers that at the time didn't exist or weren't widely known.

I approached the 3 year mark of my daily chronic migraine existence with trepidation because of Melissa's story, wondering what might be the day I gave up hope...and although I passed it with some relief that I hadn't harmed myself, I WAS haunted by the "It could have been me" thoughts, as I did have frequent thoughts of suicide and even a plan on a few occasions.

I'm glad to say I got help for the crushing depression I felt then; although it's by no means a cure, it does help me cope exponentially better.

Many of us are still lost there, though.

During a livestream Q&A I did on Chronic Illness on The Mighty, I touched on the story of Melissa's loss and how it affected me although I'd never had the chance to know her, and included her in my reasons that I feel so strongly about stressing the importance and relation to mental health and chronic pain/illness.

She still is a large reason that I do this.
My others are the my own experiences, my family, and the countless others who are in the trenches fighting this battle at any given time.

Yes, migraine can kill. It kills through depression, though loss of hope, and through suicide.
Yet it still isn't seen as the monstrous disease that it is.

I want to help change that. For Melissa and for every one of us.

- Selena

"The migraine community is deeply shaken by this young woman’s suicide. Those who knew her are crushed by the loss of a vibrant, warm-hearted, loving person who was only 22. And I believe that those who didn’t are haunted by the niggling thought, “It could have been me.” Even the chronic migraineurs who haven’t seriously considered suicide know the feeling of not wanting to live like this anymore. It is not that we want to die, but that the daily struggle of chronic migraine feels like it is too much to bear and the light at the end of the tunnel often seems nonexistent."
(Quote from The Daily Headache)

Photo from BrainWreck Rebels Melissa Dryer Foundation

Looking Ahead to June: Migraine and Headache Disorder Awareness Month

#june #MigraineAndHeadacheDisordersAwarenessMonth

We're coming up on one of my favorite months- Migraine and Headache Disorder Awareness Month!
I'll be sharing LOTS of awareness info intended to reach migraineurs and non migraineurs both, as well as awareness about other headache disorders.

Naturally since chronic migraine is my personal monster, I'll focus on it, but if you have a headache disorder you'd like featured here or on my Facebook page, please let me know! I don't want to leave anyone out--I know too well how that feels.

Also, a great all-inclusive page to follow (this month and all the time) is BrainWreck Rebels - they are excellent support and information for anyone with any type of headache disorder.

The Migraine Warrior and Migraineur Mutterings and Musings are excellent migraine pages as well. I'll be featuring some of my favorites throughout the month of June, so stay tuned!

The Love/Hate Relationship I Have With Medications for my Illnesses

I truly wish more people understood this about chronic illness:

We are not drug seekers.
We’re not after pain killers–we’re after treatment that will reduce pain.
Big difference. 

Many (if not most) of us have a serious love/hate relationship with our medications…even the ones that work for us. Possibly especially the ones that work for us.

The thing is, many of the meds we take have side effects.

I know, everything has a side effect. Something making you feel better is a side effect, if you want to get technical. I’m talking about things that, even as they help us, make us uncomfortable and actually sometimes as unable to function as we were before taking them.

Weight gain. Weight loss (yes, that can be a negative). Loss of sex drive. Hair loss. Stops the attack/pain, but knocks you out/leaves you in a fog. Impairs your mental or cognitive function- memory, ability to concentrate, etc.

And guys, I’m 100% serious when I say sometimes these are only the MILDLY annoying side effects.

I’m not even counting the “oh my god, what is this doing to my body in the long run” concerns. Or the fact that they don’t always work 100% or at all. Or realizing that there is no one magic treatment or doctor that will give us our lives back. Or that many treatments are expensive or limited by insurance.

And I know- you’re thinking if something has an unpleasant side effect, what’s the big deal? Just stop taking it.

And there’s the rub.

Because when you’re sick every day, you learn that you have to weigh the evils sometimes.

“Am I willing to deal with ___ so I can not hurt today?”

“Am I willing to deal with pain, etc., so I don’t have to take this one?”

“Can I function through the day if I don’t take this?”

And the big one: “Is feeling better worth this?”

Sometimes it is…and sometimes it isn’t.

Sometimes I skip meds so I can function, and sometimes I can’t function without them.

I can be both thrilled to have them and loathe them at the same time.

And I’m not alone.

We are legion…and we’re tired of getting the side-eye and judgments that come along with living with disorders that we didn’t ask for.

Why should we be treated as if we’re wrong to want to feel better for a while?

Wouldn’t any of you do the same?

Hard question to answer.

Most of us are still trying to answer it every day.

Confessions of a Chronic Daily Migraineur

Confessions of a Chronic Daily Migraineur: Sometimes I Suck as a Person.

 What kind of a jerk would say this?
Or think it?
Me, occasionally, right before mentally giving myself a swift kick for thinking it.   

Being chronically ill doesn't necessarily make us kinder or more understanding of others, but it can if we let ourselves take that lesson from it.

For that to take root, it has to be cultivated. And cultivated. And cultivated.

How does one cultivate compassion? By first being honest with ourselves....even when it's not pretty. 

1. I sometimes get jealous of my friends. 
Healthy ones because they're healthy, and ones who aren't healthy that have pain free days because they have pain free days.

2. I feel immediate guilt for thinking they are somehow luckier than me, because logically and emotionally I know better than that.

3. I give myself a mental kick in the butt for such a knee-jerk stupid feeling, because one of the main reasons I advocate for awareness is that I hope it may help others from ending up like me.

4. I try my hardest to never show my friends when I feel this way, but I'm often worried I'll fail at it.

5. This is a hard thing to admit and I feel like a jerk.

6. This doesn't mean I'm not happy for them when they share good news or have a good life, and definitely not that I want them to stop sharing either good or bad things with me. I still want to them to not feel guilty about confiding in me.

7. I think many who are chronically ill can relate. And that they hate to be able to relate.

8. I think a lot of us are afraid to admit the less pretty side of what being constantly physically miserable can make us feel.

9. I think we're afraid of being seen in a negative light, especially since we feel the sting of stigma already.

10. Being honest is important, especially to ourselves.

What do we do with this kind of honesty and self discovery?

We work to counter it.

Sometimes we fail, sometimes we succeed.  And whichever it is today, we give ourselves the compassion and the room to be human and fallible.

And then we pass that same compassion and understanding along to others.

Not "JUST" a Headache is an Inadequate Description of Migraine

I know this may be an unpopular post for many migraineurs, but I've got to say it:

I don't like the "not just a headache" thing. In fact, it drives me nuts. Why?

Because it's incorrect, and it still basically says that "migraine = headache plus some other things."

Migraine is not a "headache + some other things."

Migraine = NOT a headache at all.

Migraine = complicated neurological genetic disorder with a plethora of possible symptoms...one of which MAY or may not be pain. 

 

Not all migraineurs have head pain as a symptom.

Some migraineurs have abdominal pain instead of head pain. 

And no matter where you fall on the symptomatic spectrum, migraine attacks can be disabling, with or without pain. 

I really have to wonder how much we ourselves add to misconceptions and stigma by embracing the "not JUST a headache" movement. Why of all things did this become our rallying cry? Was this how we thought it would be more relatable to non migraineurs? 

Because if so, I think it's pretty much proven otherwise.

And worse, not only does it not make it easier for others to relate, it excludes many migraineurs and contributes to lack of knowledge and misconceptions, even within the migraine community.

Why are we using a phrase that limits migraine to a "headache + some other things" when we already feel we're not taken seriously as having a real illness?

Mental Health Awareness Month: Spotlight on BPD (Borderline Personality Disorder)

IN MY LAST POST, I EXPLAINED THAT MENTAL HEALTH AWARENESS MONTH IS IMPORTANT TO ME. 

THIS POST HIGHLIGHTS ONE OF THE REASONS WHY.

***WARNING: IF YOU HAVE ATTEMPTED SUICIDE OR ARE A SUICIDE ATTEMPT SURVIVOR THE FOLLOWING POST MAY BE TRIGGERING***

Originally published on The Mighty, April 19, 2017

Today, I read a post that made me think about how the stigma of borderline personality disorder (BPD) can lead to its diagnosis becoming a self-fulfilling prophecy. This quote in particular really hit home:

“Talking semantics may seem oversensitive, but the rhetoric surrounding BPD has got to change. Stop painting us as delirious, insane, selfish, dramatic, manipulative, etc. We’re battling a cruel, ugly monster that most people won’t understand, and we need help just as much as anyone else living with mental illness.”

BPD is all too commonly seen as a hopeless diagnosis, even by many mental health professionals. For most of my daughter’s teen years, she was in and out of psychiatric hospitals, attempted suicide several times and self-harmed. She was in the juvenile justice system and abused drugs. She was diagnosed with bipolar disorder, but I was positive this was not what she had. My son has bipolar disorder, and while I’m fully aware it doesn’t present the same for everyone, the diagnosis didn’t seem to fit her symptoms.

I had started doing my own research into mental disorders when my son was diagnosed a few years before, and something I read was niggling at my brain. I looked up borderline personality disorder. The description fit her perfectly. Every trait was dead on.

My daughter and me (2016)

Her doctors refused to entertain the thought that it might be BPD. What did I know? I was only her mother, and they were licensed mental health professionals. I was met with condescension for the most part until she was 15, when a suicide attempt landed her in the hospital yet again and the doctor treating her had more concern for her welfare. He agreed that her behaviors and thought patterns absolutely fit the description of borderline personality disorder and suggested we find a therapist certified in cognitive behavioral therapy (CBT).

Still, we almost exclusively heard medication and therapy were “not likely to be terribly effective, so we hate to saddle someone with that diagnosis.” Her official diagnosis remained bipolar disorder, but it was added that she had borderline traits in the interest of getting help geared toward her needs.

But what we discovered repeatedly was that instead of her needs being met, the misconceptions and stigma of BPD often meant she was written off as a “hopeless case” by many. Some therapists and psychiatrists still hold this view, and their clients suffer for it, even to the extent of being given up on or not accepted as patients.

We had one nurse tell us to hang in there, that she had BPD but was finally doing better. The therapist we found was encouraging and wonderful. Only two people amid a sea of professionals were hopeful.

Why is BPD so stigmatized?

Some of the most widely known traits of BPD are often seen as character faults a person could “just change if they really wanted to.” Traits such as attention seeking, intense emotional reactions and manipulative behaviors. In a teenager, they’re often blown off as being “dramatic” or “acting out.”

It’s not that simple. BPD is a disorder, not a state of mind. Treatment can help a person mitigate and manage those traits, but one cannot just “decide not to be that way.”

I’ve frequently seen it said that treatment doesn’t help because those with BPD often don’t seek it or think they don’t need it. This idea is misleading because a number of people with other mental illnesses also don’t seek treatment, think they’re OK or think they don’t need it. Yet BPD is the disorder most commonly associated with this belief. BPD is too often treated as the “redheaded stepchild” of mental disorders, even among others who have mental health disorders.

(We do a lot of SELFIES in this family. I'm sure you can't tell, right?)

With these and other misconceptions about BPD, is it any wonder many give up hope or lack support?

The amount of negative information or misinformation about BPD and the lack of positive information on the internet is appalling, which inspired my now-adult daughter to write an encouraging article about parenting with BPD which was published on The Mighty.

BPD is not a hopeless diagnosis. My daughter may still have room for improvement (don’t we all?), but over the past five years, she’s made amazing strides. She stopped using drugs and has been sober for five years, she’s back in therapy, she’s maintaining well and she is a wonderful mother to my “grandspawn.” She’s reached out to encourage others with BPD via the article she published. I’m incredibly proud of her and all of she’s done and is doing for herself and her son.

BPD is not a hopeless diagnosis. The right therapy for an individual, a good doctor, perhaps medication for associated illnesses like depression, anxiety and a strong support network — these can make an invaluable difference for a person struggling with BPD.

And aren’t our loved ones and ourselves invaluable enough to deserve those things?

My daughter is living proof that BPD isn’t a hopeless diagnosis, as are many others. But a great many need hope. Let’s help spread that hope for them instead of stigma.

Mental Health Matters As Much As "Physical" Health

May is another favorite advocacy month for me: Mental Health Awareness Month.

If you've read any of my previous blog posts, you'll know that mental health is an important subject for me, both in conjunction with chronic illness and on its own.
If you think I stress mental health awareness as it is, buckle up, because I'm going to really focus on it this month.

Mental illness has impacted my life in many areas; both of my birth kids have mental disorders, my 2 adopted kids have both had some issues with depression and trauma, I have depression and anxiety, and I have friends who live with mental illness as well. Currently, the hashtag #1in4 is trending, because 1 in 4 people have mental health issues. Chances are that if you are not the 1 in 4, you know someone who is.

Although we have evolved into a society that is more accepting of mental illness, stigma is alive and well, even within the mental health community. We have more awareness and openness about depression, anxiety, and bipolar disorder, but many other mental illnesses continue to be bypassed or misunderstood.

This month I'll be focusing on the mental health issues that have affected my life.

Happy Mental Health Awareness Month and spread awareness, not stigma!

Turning Pain Into Poetry

I love April.

April is not only my birthday month, it's National Poetry Month here in the US.

I've loved and written poetry for as long as I can remember. To me, it's as necessary as the air I breathe. So it was natural for me to incorporate my illnesses into my writing when I started progressing from episodic migraine to daily chronic, when depression had the upper hand, when traumatic memories came knocking, and when life in general dealt out lemons.

It's also my self therapy (I despise journaling personally) and a part of how I reach out to others...nothing says "me too" like reading your own thoughts, struggles, pain, loves, or triumphs in blazing emotion from another person.

And there's nothing like that "I'm not the only one" moment. I know because I've been there--from being an abuse and domestic violence victim to motherhood to depression to chronic illness to life in general to beautiful moments.

Turning pain into poetry...into a blog post...into art...into outreach...into advocacy...into connection with others.
I have never subscribed to the belief that our struggles are given to us as part of a mysterious greater plan/purpose or to better us, because I don't believe God is that cruel ("Oh, let's take her niece, because then she'll write an article about grief that helps others"...seriously? That's not the God I follow), but I DO strongly believe that we can turn anything into an opportunity to help others.
In doing so, we give it our own purpose.

This National Poetry Month, I'm celebrating that purpose.

Mourning the Loss of an Advocate: Amy Bleuel

****WARNING--THIS POST MAY BE TRIGGERING IF YOU HAVE SELF HARMED, CURRENTLY SELF HARM, OR ARE A SUICIDE ATTEMPT SURVIVOR.**** 

My heart has been heavy the past few days since the report of mental health advocate Amy Bleuel's death was released.

For those who don't know who Amy was, she pioneered a network of peer support via her non-profit organization, Project Semicolon, founded in 2013. Project Semicolon exploded into social media consciousness in 2015 when pictures of semicolon tattoos inspired by the Project took off and started spreading like wildfire, but I was a follower of the Project since 2014 when I came across a photo on Facebook dedicated to Semicolon Day:

(The above photo is from 2015, but the one I came across was the same or similar.)

Project Semicolon defines itself as "dedicated to presenting hope and love for those who are struggling with mental illness, suicide, addiction and self-injury", and "exists to encourage, love and inspire."^[8] While they are devoted to achieving lower suicide rates in the U.S. and worldwide, they do not themselves practice psychiatry, and the staff are not trained mental health professionals.^[4] Rather, they recommend contacting emergency hotlines (e.g. 9-1-1 or the National Suicide Prevention Lifeline) or seeking mental health professionals.^[9]

According to a report by the Centers for Disease Control and Prevention, suicide is the 10th leading cause of death in the United States. with 42,773 reported deaths in 2014.^{[10] (from Wikipedia)}

I can't stress enough how important the Project was to me as someone who has a past history of self harm, who has struggled with depression and anxiety, and as a suicide attempt survivor and the mother of a suicide attempt survivor.
Amy made it okay to talk about these things more openly for so many and touched so many lives with a small punctuation mark. By nature, those who self harm tend to hide what they do. There are differing reasons and methods of self harm that I won't go into here, but the nature of the stigma has prevented many from seeking help or having hope for recovery. Suicide attempts often have similar stigmas attached, and many survivors, suicide loss survivors, or those considering suicide tend to feel alone even in the mental health community. Amy gave us a place there.

As an advocate for mental health as well as chronic illness, I admired and continue to admire Amy and her message of inclusion and support.

Amy was a suicide attempt survivor who struggled with depression and trauma PTSD herself, and whose father died by suicide. As many know, survived suicide attempts increase the risk of death by suicide in an individual. Yesterday, it was indeed confirmed that Amy died by suicide.

People tend to think mental health advocates have the answers and have conquered, but we're really still in the battle with them.

We're navigating the same waters, but don't necessarily have a lighthouse in sight, a life jacket, or even know how to swim in uncharted waters...we just know we're called to help others.
Sometimes in helping others, our own self care takes a backseat; sometimes because it's easier to focus others' problems, sometimes because we get caught up in what we do, and other times because we just don't see that we have that same safety net we try to be.

When an advocate dies by suicide, people wonder what will happen to those they reached out to.
Will they feel "cheated" or abandoned?
Will they lose hope and give up?

Such a loss does not invalidate the message or their work. It makes it more important.

Rest in peace, Amy Bleuel. Your story is still not over, and neither is your legacy.

~ Selena Marie Wilson ~

My Life Story, Written In Flesh

****WARNING: THIS POST MAY BE TRIGGERING IF YOU HAVE SELF HARMED, CURRENTLY SELF HARM, OR ARE A SUICIDE SURVIVOR****

I don't know a single person that doesn't have at least one scar.

Large or small, prominent or barely noticeable, every scar has a story attached; sometimes one we remember firsthand and sometimes one told to us because we were too young to remember.

This post is a celebration of all we've lived and struggled with and survived. Our scars are our story...written in flesh or carved in our minds. 

"That's from the time I was chasing my sister on my bike and she stepped in front of me. I swerved on the gravel and the road bit my face. I refer to it as one of her two attempts to kill me. ( Kidding about her intention, not about how I refer to it. )" - me

This could be an example of one my daughter might tell:

"This one is from an emergency appendectomy when I was 8. I got sick from the anesthesia, so they gave me Phenergan. Turns out I have a really bad reaction to it, my mom says I was ripping out my IVs and crawling over the bed rails until they had to give me something to make me sleep."

My friends have scar stories of their own:

"My beautiful battle scar on my upper right arm is still with me to this day! When I was 13 I was diagnosed with stage 3 Melanoma  (skin cancer). The surgeons cut away the entire cancerous section including some of my muscle. The surgery itself was 8 hours.  After months of more minor surgeries, stitches, Dr appointments, rehabilitation, and treatment I was in the clear, as in remission for 5 years." - Abby

"My favorite scar is from a c-section at 19. Frank Breach they called her. Her adoptive parents named her Alyssa. I like that name; I love her wherever she is." - Ericka

Not all scars are physical or visible, but are still carried with us and remembered vividly in a way that affects us years later:

"This one is from when I went to the ER for a severe Migraine attack. The doctor decided to give me Ketamine, also known by its street name, Special K. While rubbing his hands together and bouncing on his feet, he said to me in a giddy voice, "This will be fun!"
It was not fun. The walls moved around me and started closing in on me. The clock on the wall was making circular trips all around it. My bed felt like it was on violent waves of the sea, and I held on to the rail for dear life. My right leg disappeared. I couldn't find it. Then I felt myself fading, until my consciousness was nothing but a small speck in my chest. I thought I was going to be snuffed out for good. I screamed and screamed for help, even though I couldn't hear myself. The nurses ignored my complaints and asked if my Migraine was better. It wasn't. Shortly after, they came back with a second dose and said, "This will help."
It didn't. They left me alone for 2 hours with my hallucinations and paranoia and then sent me out the door in a wheelchair.
My Migraine was still not better." - Brianna

"These are from years of mental and emotional abuse from my father. They aren't all healed even now, 20+ years later." - me

"This one is from my father walking out on us." - anonymous

"My invisible scar is from being raped." - anonymous

Some scars are visible, but not understood...often those who carry them try to keep them hidden because of reactions based on the stigma attached, rather than compassion.

"Are you talking about physical scars or emotional/psychological scars as well? You could write a book on my psychological/emotional alone, but the physical one would be my body. I eat my feelings so it shouldn't surprise me that I look like I do. There are a few others from when I was cutting myself but they are hidden really well. Another thing is since I have always researched any diagnosis and/or test result is I also research the treatments so when I was cutting myself I knew where not to cut. I was mindful of being able to hide them." - Malinda

" These are from years of self harm--for me, it was easier to deal with the physical pain than the emotional pain. Some are hidden, some aren't; they are the days when the only thing that mattered was the physical pain to shield and distract me from emotional anguish." - me

"This one is from a suicide attempt." - anonymous

"I never hid my self harm scars. But people pretended not to notice because it was easier than admitting to themselves I needed help." - anonymous

"My scars are proof that I fought my demons and survived myself.  They are a reminder of my struggles I've conquered." - me

Sometimes scars are something that helps us relate to others or reminders that others are fighting battles we can't always see. No matter which they are, our scars are part of us and of our story and can be used as a source of triumph over the things we've come through.

May your story be a tale of triumph and compassion. 

What Does Chronic Migraine "Look Like," Anyway?

Chronic migraine is defined as 15 or more pain/migraine symptom days per month, but for quite a few of us it progresses to much more–daily or 24/7 symptoms and suffering.
It’s also called an “invisible” disorder, meaning you can’t see it, which often leads to skeptical reactions from medical professionals, employers, coworkers, and sometimes even friends and family.
It’s a bit odd to me that so many disorders and diseases are referred to as invisible when their effects wreak such obvious havoc on our bodies and in our lives. I tend to believe that they can be visible…for those who wish to look past the surface.
Here are some of the things chronic daily migraine looks like to me.

It looks like fighting to prove you’re disabled to those who can’t see it.

It looks like cancelled plans for the umpteenth time.

It looks like friends who stop inviting you out, but who can’t or don’t come visit you.

It looks like days in bed in the dark when your family is in the living room watching TV, laughing, and talking.

It looks like a messy house, unwashed dishes, and sitting on the couch in pjs wishing you could clean it up but knowing you can’t.

It looks like days missing who you used to be and what you could once do without planning exhaustively for a bad episode.

It looks like a beautiful day outside with you looking out the window from your bed.

It looks like feeling worthless and alone.

It looks like unbrushed hair and no makeup, because no one is coming to see you or you can’t tolerate visitors and you can’t stand the pain long enough to get pretty (or passable) anyway.

It looks like missing time with your grandkids.

It looks like people who think or say “you can’t be THAT sick all the time” or “aren’t there treatments for that?” or “God won’t give you more than you can handle.”

It looks like prescription bottles and a medication schedule and side effects and treatments no one would volunteer for unless their disease was much worse.

It looks like suggestions to “cure” you that range from “have you tried cutting ____ out of your diet?” to “I hear this body piercing gets rid of migraines” to “you should exercise more” to “doesn’t sex get rid of headaches?”

It looks like being asked “you still have that?” after 5 years of telling people what “chronic” means.

It looks like feeling “okay enough” to do laundry OR do dishes, but not both and definitely nothing more.

It looks like people who say “but you LOOK great!” or “but you don’t LOOK sick!”

It looks like countless medical tests with inconclusive results because there is no test to prove the existence of migraine disorder…only ones that rule out other possible causes.

It looks like explaining for the thousandth time that migraine is a genetic neurological disorder that affects the entire body and NOT a headache.

It looks like rescheduling a doctor appointment because you’re too sick to drive.

It looks like people sniggering behind you about “What [drug/other speculation] you must be on” because you can’t walk straight courtesy of aura or vertigo or both.

It looks like disbelief when you list your symptoms, diagnosis, and pain level at the ER.

It looks like uninformed and under educated medical care unless you see a specialist.

It looks like inconsistent or rationed treatment because of the expense of medication and specialist visits.

It looks like a years on end long list of ineffective treatments you’ve tried and that have failed.

It looks like someone who had a perfect 4.0 GPA feeling dumbed down because she now has trouble finding the right words, remembering things, and making once-easy connections.

It looks like your specialist telling you very gently, “There’s not much to try beyond this, and these are the odds it will help…but even if it doesn’t I’m not giving up on you.”

It looks like depression, suicidal thoughts, and anxiety about the uncertainty of each day and the future.

It looks like new symptoms cropping up and surprising you unpleasantly.

It looks like your mother telling you that the birthday gift she’d like most would be you getting to have a good day with less pain.

It looks like your boyfriend feeling helpless because he’s a “fixer” and he can’t do anything for you but be there (or if you are a grumpy sick person on really bad days like me, leave you alone).

It also looks like your boyfriend learning about your disorder and patience and limits right along with you.

It looks like learning to live with a much-limited sex life.

It looks like finding new ways to define yourself and a new idea of self worth.

It looks like smiling in front of strangers or people you don’t want to worry as if the pain and other symptoms aren’t breaking you.

It looks like finding the beauty in small things.

It looks like learning to appreciate small accomplishments you never would have thought twice about otherwise.

It looks like bad days when you envy those who can afford to go to the doctor for checkups and preventive care while you are debating if you can afford to take your last abortive dose for the month…mid month.

It looks like a repeated cycle of the stages of grief in no particular order as you grapple with the old life you lost and acceptance of the life you didn’t choose.

It looks like learning to cherish the good moments and to hang on to them for all they’re worth as a buffer against the bad and unbearable days.

It looks like nothing to those on the outside looking in and everything to those living it.

It looks like me.

And it looks like him…and her…and millions of us struggling every day with something no one else can see.

A Beautiful Life

My belief. My story.

I've lived through emotional and physical abuse.
I've lived through rape.
I've lived through depression and self-harm.
I'm living with chronic illness--chronic migraine, depression, and anxiety.

You can let it break you down, or you can keep going. I used to say you can overcome it, but I've since learned (thanks, chronic illness) that some things can't be overcome. They CAN be gotten through, lived with, and we can live in SPITE of them, though.

Some days are harder than others, no matter what you're going through. Some days I'm a quitter. Some days I give up. But there's always a new day and a new chance to reach inside yourself for that spark that keeps you going.

"It's not what happens to you, but how you react to it that matters."
Epictetus

I've found this to be true, whether it's what has been done to you or just what life throws at you.  Bad things happen. Horrible, unjustified things happen. Things or people scar you and wound you. You can't always control what happens to you. But you can control what you DO with what happens to you.

You can chose to let it make you do bad things, to give up on life, to be frightened of life, and/or be bitter.
Or you can chose to let it make you compassionate to others going through it, a fighter, and/or a victor.

Don't get me wrong. I've chosen the first set of options before. I've hurt people and done things I knew were wrong. I've lived in fear of getting close to others and in fear of betrayal. I've lived in fear of myself, and with anger of epic proportion. I've lived without caring if anyone cared for me or about what I did.

I've learned that it hurts you more than anyone else to live that way. It keeps you tied to those hurts and those who hurt you. It gives them the power to keep controlling you and your choices.
Plain and simply, what it is IS giving up control and responsibility of your own life.

It's why I eventually came to choose the latter options.

It's not easy, but it IS worth it. It can become beautiful.

On Depression and Losing My Childhood Icons

I haven't done a new post in a while--I've been fighting monsters.

No, really.
I've been fighting my daily chronic migraine without meds for a month, and it's been really an exercise in willpower to find reasons to keep fighting while I wait (and wait and wait) to hear anything on my application for disability.

Depression has been my constant companion lately, and the death of yet another of my childhood and adult heroes has affected me deeply.

Carrie Fisher was the princess we girls needed in the late 70s and early 80s--a tough, take no shit lady with a vulnerable side. As an adult, her openness and advocacy for mental health has been amazing and a role model for my own advocacy.
Her death on top of the loss of so many other pieces of my childhood has left me reeling.

It's also made me think (scary, I know)--why do the deaths of my childhood icons affect me so profoundly?

Because they've been a part of the many lives I've lived. Imaginary lives, but still...I've been a Rebel Princess, a warrior princess, a crime fighting "angel," an amazon princess, a smart arse teenager with a stolen baby sister..I've been in a galaxy far, far away, in the Labyrinth fighting a goblin king, and my own house simultaneously. I've fought with lightsabers, blasters, a lasso of truth, my fists, and my wits. I've journeyed Middle-earth and Narnia. I've been a wizard, a mutant, an elf, a hobbit...all before second breakfast.
I've been a glittery rock star and a soulful crooner (not for an audience, thankfully). I've sworn to never dance again the way I danced with a good friend.

But mostly, I lived and dreamed and breathed through other characters when I was a kid still trying to find out who I was and who I would be.

The people who brought to life all those pieces of me...have been pieces of me. They've given me heroes and adversaries worthy of them. They gave me an escape when I needed one, sang to my soul, and gave me the courage to become me in all my many facets.

I mourn what they were to me and the loss of the people they were in their own lives.

Rest in peace, Carrie. You are one with the Force now. Thank you for all you gave me.