Day Five

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Day five of my stim-free week.  Today wasn't so bad.  I finally got some sleep last night.  I decided to do a little aerobic exercise for thirty minutes last night to ensure that I'd be tired enough to fall asleep and it worked!  I slept from around 1 am until about 2 pm today.  I took care of some things and decided to get a massage.  I haven't had one in three months; I'm a member of Massage Envy which is a chain of massage/spa clinics across the country.  For $49 per month I get a one hour massage (prices vary by location).  They roll-over like cell phone minutes so you never lose them.  You can combine them for a two hour massage or use two for a hot stone massage - one of my favorites!  I usually get a cranial sacral massage but today I just wanted a relaxation massage.  I almost fell asleep on the table and didn't want to move.  Anyway, I'm hopeful that I'll get some sleep tonight.  If you're interested in learning more about Massage Envy and their membership program, click here.







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Day Four

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Day four.  I haven't slept since Monday night so I'm a pretty cranky zombie who is hating life and the world right now.  Insomnia is the bastard child of migraine disease and fibromyalgia.  I hate all three.  Will tomorrow be better?  Who knows...



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Today is Chronic Migraine and Suicide Awareness Day!

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Today is the first Chronic Migraine and Suicide Awareness Day!  I hope that everyone is wearing their purple, red and black in recognition of this debilitating disease and how it's unending pain can and does lead to suicide.  I, myself, am a suicide attempt survivor and am really about spreading this information to as many people as possible.  I also want to get people talking.  Suicide is a very taboo and stigmatized subject all across the world.  It's seen as an act of weakness and of giving up when it is the end result of some kind of overwhelming and overbearing pain, whether emotional, physical or both.  So, please show your support to those of us who suffer daily and think of suicide as an option to ending our pain because no one else is trying to help us manage it.  We chronic migraineurs are often overlooked and under treated and this must end or we will continue to lose lives to it.  Chronic migraine is a beast; a very unrelenting one.  Get out there and talk about it.  Family members and friends of migraineurs, please do not diminish their disease or treat them like their hypochondriacs or liars or lazy.  This is REAL.  How would you feel if you were in pain every single day of your life and you had the ones who you love not believing in you or have doctors that treat you like you are overreacting and making up your symptoms?  It would feel awful and lonely, wouldn't it?  So, I implore every single human being out there to stop being self-centered when it comes to Migraine disease and it's many different counterparts.  No one enjoys being in pain and believe me, no one would purposefully want to be a chronic because it is the worst kind of life there is to live.  Support us.  Love us.  Treat us.  Believe us.  Uplift us.  We desperately need it.

WEAR YOUR COLORS!!!

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Day Three

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It's day three without using my neurostimulator.  Yesterday I spent the majority of the day sleeping.  The morphine from the hospital visit Saturday and the Percocet I was given has kept me up for two days.  I don't know if this happens to anyone else who is a chronic as well, but a lot of the time narcotics make it difficult for me to sleep.  Well, because of that I crashed yesterday afternoon and slept all night.  I feel horrible because it was Memorial Day and I was supposed to take my kids for ice cream.  I already felt bad because there wasn't anything for them to do.  I hate disappointing them so I have to make it up to them.  I still feel groggy and light headed and I hope I feel better by the time they get home from school.  Anyway, here's my recent video taken this morning and I'll see you tomorrow!


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How Quality of Life is Better With a Neurostimulator - Video Diary

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Day One

It's been a little over a month since getting my permanent peripheral nerve stimulator (PNS) implanted.  Before having it done I was experiencing Chronic Daily Headache (CDH), Chronic Migraines (CM), and Intractable Migraine.  That pretty much meant that I had a daily headache along with fifteen or more migraine attacks per month that became tolerant to treatments and unable to be eradicated.  So you can pretty much assume that there was no quality of life for me. I spent most days in my bed trying to stay away from light, noise, smells, chaos....I was avoiding life.  Receiving this PNS has saved my life.  I had gone from daily pain to almost no CDH and the CM has been reduced to between 4-8 per month.  Those consist of full blown migraine attacks which aren't affected very much by the stimulator.  It usually brings the pain level down to a tolerable enough level (around a 6 or 7 on the pain scale) for me.  As I have been documenting this progress I thought that I should try one week with it turned off to see if my CDH and CM would revert back to normal and then one week with it turned on to show any differences in my quality of life.  It's sort of an experiment where I can truly see how much this PNS has helped in the management of my headache disorders.


I started out today without my stimulator turned on.  It so happens that last night I had the worst migraine attack I had ever experienced in all my 26 years of having this disease.  I had to be taken to the hospital by ambulance, that's how bad it was.  Ironically, it coincides with my little experiment so I was able to show how I look after a bad attack.  Here's my first video of life with Migraine disease....



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There's Still Hope In Sight - Chronic Migraine & Suicide Awareness Day!

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May is National Suicide Awareness Month. Suicide is a very real possibility for thousands of people who suffer from Chronic Migraines and/or Chronic Daily Headaches. A life of chronic pain takes a toll on someone, not only physically, but mentally also. We feel like burdens to our families and carry a tremendous load of guilt, anger, sadness, and emptiness. Show your solidarity and recognition of the duality of pain so many of us live.




We are declaring May 29th to be Chronic Migraine & Suicide Awareness Day. Show support and wear purple, red, and black - the colors of our ribbon - and bring as much light to a very dark reality many people call life.  Depression is a comorbid condition to Migraine disease.  Depression is not a symptom of Migraine disease, nor the other way around.  It is very likely that a person with Migraine disease will also have depression.  Mostly due to the poor quality of life a migraineur, especially those with CM, have.  The risk of suicide is increased by more than 50% in people who are [clinically] depressed showing a relationship between suicide and depression.

After my attempt there wasn't anyone who I knew that could understand what I just went through.  Besides, who willingly goes around telling people that they recently tried to kill themselves?  Exactly, no one.  It would have been so nice to speak with people who had the same disease I did and felt the way I felt about living a life of pain.  I was very lonely and felt very misunderstood.  That is why I have started a support group on Facebook specifically for people with CM/CDH and who feel they are at the end of their ropes.  It's a secret group so only members can see what is written there.  We never speak of what is discussed or shared there to anyone outside of the group.  There is such a shared sense of understanding and sympathy that we wouldn't be able to get anywhere else.  It's unfortunate that when faced with the daunting image of a future consisting of daily pain, one would rather not wake up to another day of misery.  That thought is almost always comforting.  Spoken to an individual who does not experience chronic pain and does not have depression, that looks selfish and weak.  The stigmas surrounding suicide, mental illness and Migraine disease need to be eradicated so that we are finally given the freedom and safety to be honest about how terrible we feel.  Most of the time, in the case of chronic migraine sufferers, suicide ideation is expressed.  Someone who is exhibiting suicide ideation has/is:  

  • Expressed or communicated ideation
  • Threatening to hurt or kill him/herself, or talking of wanting to hurt or kill him/herself; and/or
  • Looking for ways to kill him/herself by seeking access to firearms, available pills, or other means; and/or
  • Talking or writing about death, dying or suicide, when these actions are out of the ordinary.
Suicide ideation is one part of many warning signs of suicide.  An easy way to remember them is with the mnemonic IS PATH WARM? Seek immediate help from a mental health professional if any of these are observed.  Call 1-800-273-TALK(8255) and get a referral.

 I   Ideation
S  Substance Abuse

P  Purposelessness
A  Anxiety
T  Trapped
H  Hopelessness

W Withdrawal
A  Anger
R  Recklessness
M  Mood Changes

If you are having these thoughts, have attempted in the past or are a family member or friend of a someone in chronic pain, these websites can help get you in touch with a mental health professional or gain access to valuable information to better educate yourself.







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Post Surgery - How the Neurostimulator Works

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Well, it's been four weeks since getting the implant of my neurostimulator and the success of it has been great!  I knew that this wasn't going to "cure" my migraines or chronic daily headaches, but I also knew that the amount of pain relief that I can get from it would completely outweigh all of the other treatments I've tried in the past.  I was hoping to get at least 70% pain relief.  To my surprise, I've been experiencing 98% pain relief!  My chronic daily headaches are gone and the frequency of migraine attacks have gone down from 2-3 per week to 1-2 every two weeks.  That's pretty amazing!  I'm so excited about it and I'm very optimistic about my future.  Receiving this neurostimulator has changed more than just my pain.  It's given me a new lease on life where I know can begin to enjoy living again.  It was so exciting to finally see a movie at the theater two weeks ago.  It's been over a year since I last been to a movie theater.  The sound and big screen became big migraine triggers for me.  I could finally sit through an entire movie and actually enjoy it without cringing in pain.  That was a great day. 8-D


As promised, here is a video describing my stimulator and how I turn it on and off, adjust the level of stimulation, and how I recharge it's battery.  I hope that this offers more insight on neurostimulators as a form of chronic pain treatment. For more information regarding my system, visit www.medtronic.com/patients/chronic-pain/treatment.



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My Pain Isn't Just Physical

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Over the years I have encountered many ignorant and misled people who spoke very naively of migraines, not knowing that they were being hurtful.  Having to deal with intense pain at the age of eight and not being heard by my doctors or parents when I explained how treatments weren't working, opened up the gates to depression.  I recognize now in my thirties that I was very depressed as a child and young adult.  All I knew then was that I was unhappy and sad a lot of the time but couldn't explain why.  I knew that wasn't a normal way to feel and having that knowledge made me even sadder.  Yet, my mind would automatically try to dismiss those feelings because my migraines were almost always dismissed as being a simple, treatable inconvenience.  I was conditioned to not expect compassion or understanding and to expect to suffer alone.  Migraines are tremendously polarizing and quickly leads to the building up of walls to protect ourselves from all of the harsh criticisms and judgements we face.  Thus was born the pessimist.  I stopped expecting something good to happen and began anticipating for the worst.  And so, with my walls as my shield of armor, I proceeded through life.

I wish that I knew I was clinically depressed, but I didn't know that what or how I was feeling wasn't part and parcel to migraines.  And by the way, mental illness isn't a discussion most families have at the dinner table.  I don't think that the comorbidity of migraines and depression was known during the 80's and 90's, so who would have asked if I was feeling a certain way?  Emotions were never a discussion in the doctor's office.  All of these experiences have a huge part to play in my suicide attempt.  I never would have guessed that I'd be so emotionally broken that I'd try to kill myself.  But no one talks about the emotional side effects of migraines.

It's no wonder why that is, though.  Both migraines and suicide carry with them huge stigmas.  It's utterly uncomfortable to talk about either one let alone both.  Thank goodness I'm okay with being very open about the truths behind these ailments.  It wasn't always easy for me to talk freely about them.  My journey has brought me to a place of comfort where no one or nothing can devalue my life, because migraines, depression, and my suicide attempt are my life.  My illnesses are very real and very serious.  I want for the millions of migraine sufferers to have the strength and conviction to say the same.  But, everyone's journey is different and circumstances varied.  So I can't or won't expect anyone else to be in the same head space as me.  Until then I'll gladly be the voice of enlightenment to society about the truths of the migraine community.

A life of chronic pain is a life of chronic emotional pain as well.  I still struggle with the heavy burden of guilt that my migraines and headaches bring.  I still fall victim to want to end it all because I can't go through one more minute, let alone day, in pain.  It's very tempting and comforting to think that it'll all be over if I swallow all of my pain meds.  To the people reading this who has never experienced depression and chronic pain first hand or through a loved one, I sound selfish.  That couldn't be farther from the truth.  I see myself as inadequate for my family.  I can't be a fully functional adult.  I'm not able to be the wife, mother, and individual that I want to be.  So why should my family suffer?  Society has to begin to understand and accept that for the most part, the act or attempt of suicide is in the name of love.  We would gladly sacrifice ourselves it it meant better lives for our families.  Yes, being tired of living in pain has a big part in it but I find that it's the love for our families that really make us try.

So, the next time there is a discussion about chronic pain and suicide, please try to put yourself in the sufferer's shoes.  How well could you cope?  We need to break these stigmas so that more people talk about how they really feel and not be ashamed to ask for help.  Feeling suicidal doesn't make you weak.  Living a life of physical and emotional pain makes you some of the strongest people alive.  Not everyone is built for this kind of life, but just because you have weak moments doesn't make you weak-minded.  It just makes you human.

This month is National Suicide Awareness Month.  Please help by reaching out to those who may be dealing with these issues and for whatever reason aren't able to speak up about it.  Everyone has a voice.  Help save a life by validating the voice of the person who feels like life isn't worth living.  


Support Chronic Migraine and Suicide Awareness!!  Join us on May 29th by wearing red, purple and black to show support and solidarity!

If you feel suicidal, don't be ashamed.  There's help. Call the National Suicide Prevention Lifeline at:
1-800-273-TALK or visit their website at:www.suicidepreventionlifeline.org.
There is a light at the end of the tunnel.

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Putting Our Heads Together Poetry Contest, 2012

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     I just entered a poem into the contest that I had no intention of writing.  A small phrase came to me and it took off from there.  If you're interested in entering a poem or poems (up to three), complete the Entry Form.  But hurry, as the deadline for entering is Midnight, Friday, May 11th, 2012.  Good luck to all of the participants!

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Four Hundred Years

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Last night I watched a very good documentary that aired on VH1, Uprising: Hip-Hop and The L.A. Riots, that chronicles the reaction of the black community and the role Hip-Hop played when four white police officers were acquitted of the vicious and brutal beating of Rodney King.  Something came over me while I watched the injustice, anger, repression, violence, and pain play out on my television screen.  It's been over 10 years since I last wrote any poetry.  Verses would come to me all the time at any moment.  But it was when something really moved me that the real beauty of words flowed out of my mind, through my hands, and onto the paper.  I have missed that ease of expression. Unexpectantly, that old familiar feeling crept up in my mind and before I might forget what just popped into my head, I grabbed my notebook and started writing.  The result was a culmination of emotion and experience, but mostly humbleness and great respect for the past from which I, and others like me, have emerged.

Four Hundred Years

Don’t pigeon hole me
‘cause you’re scared by my color;
Or assume I’ll just be
an uneducated mother.

Don’t be so quick to think
I’ve only one purpose;
Or have fallen victim to
one of our so-called “curses”.

My thickness you envy
‘cause your curves are nonexistent;
Then tell me I’m no more
than a loud, angry vixen.

Images portray me as
an abuser of public assistance;
Or spend my whole check
on a ghetto fabulous appearance.

Don’t be so surprised
when I open up my mouth;
‘cause I don’t sound like
I’m a  high school dropout.

I’m more than my gender,
even more than my race;
You’re scared that I’m smart
and won’t stay in my place.

My blackness is regal,
it’s mighty and true;
You want what I have and
know what I already knew.

The Lord is my shepherd,
I shall not want;
He shields me from all
of the evil you taunt.

The stuff I am made of
was born of sacrifice;
I’m humbled by all of the
blood, sweat and tears.

The quiet of greatness
amidst many fears;
On the shoulders of giants we have stood
for four hundred years.

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