Monday, January 30, 2012

Hurt People hurt people.


Time out.

Step back. Cool down. Take a deep breath. Now take another.

Hurting people hurt people. It is true. We often don't mean to but we still do. In October 2011, I shared about when George did something to upset me and I unleashed my hurt upon him. I encourage you to read it even if you've read it before Yesterday, I lost my temper.

If you are hurting for whatever reason:
family issues
relationship issues
someone was unjustly cruel to you
you've been abused in some way 
you feel lost
you are lonely
you have been abandoned
you have been betrayed
something complicated that you can't explain
for a reason you don't know,
(fill in the blank)                ,
or all of the above combined:

First of all let me send you some compassion for enduring your hurt. Next, I think it is important when we are hurting that we remember to take a breath before we talk, phone, write, text, IM, email, tweet, message or communicate period.

We need to be aware of and take responsibility for:

our pain,
             our rage,
                          our anger,
                                       our sadness,
                                                          our frustration,
                                                                               our irritation,
                                                                                                our bitterness,
                                                                                                                       our darkness.

Our hurt.

Hurt People hurt people.
  • Hurt magnifies and fogs everything at the same time. We do not see as clearly. We do not think as clearly.
  • Our hurt may lead us to ramp up the defense and put us on the offense.
  • Our hurt might lead us to lash out.
  • Our hurt may lead us to give up and shut down.
  • Our hurt makes us susceptible compare by saying "I have it better/worse off than s/he does"
  • Our hurt might make us feel like yelling, "If only they knew ____!"
  • Our hurt may lead us to ask "Why don't they/do they _____?" 
  • Our hurt (fill in the blank)                                                                       .
Hurt People hurt people.

We are a global community, national community, health community, friendship community, family community all of hurt people.

I am a hurt person. You are a hurt person. We may not often or always feel it or show it, but we all have had hurt at some point in our lives.

Being aware and taking responsibility for our hurts is the first step in not hurting someone else. Choosing to have compassion for others is another step. Today I was hurt by a hurting person. I am betting so were some of you. (((Gentle hugs.)))

I am going to conclude this post the same way I concluded Yesterday, I lost my temper by saying,
So many people bail when times get tough. Let's not hurt the ones that stick around.
I do not like writing posts that "label" people one way. My belief is that we have many facets to us and in this post I write about just one of those facets: hurt.

Saturday, January 28, 2012

Project Migraine Hope-Rising Up

Project Migraine Hope has officially lifted off and even has its own Facebook page. We are working on an official logo and will share that with you as soon as it is ready.

Check out the videos that have been posted to get ideas on what to include in your post! Please be yourself. This is not a professional thing so do not think your post needs to be perfect or even close to it! We are just a group of people sharing with each other. We want you to be who you are and be real. If you have any questions or concerns, make sure to email us at projectmigrainehope AT gmail DOT com

The community needs to hear your story of how Migraines have affected your life and how you get through times of darkness and find hope.

Don't forget to "Like" the Facebook page!

Tuesday, January 24, 2012

Behind the Mask

A few nights ago, after a rough day, I asked George to pass me my Nikon N5100. I asked him to look at me for a test shot. He had no time to pose or to think. He was tired.  Here is the shot.

Then I told him to take group of photos of me with the same framing as the test shot. I did not pose for the photo, but looked into the lens just as I was.

Then, I did what every person with chronic illness does. I put on a mask. I re-did my pony tail. I put my glasses on, I stood up straight and I smiled. Here is the shot.

I know I still look don't look 100% with the puffy eyes, but the change is significant from the first shot of me even though they were a minute apart. Out of the several photos, he took, I asked George to pick the photo of me that he felt he sees the majority of the time. He picked the one of me above this one...without the glasses. In the second photo, you see my mask.

Yes, those of us with chronic illnesses put masks on all the time. We are pros. I put one on for my wedding day because I wanted to enjoy my day and not talk about how bad I felt the whole time even though I had cried in the bridal suite just before entering my reception. I think sometimes we don't even realize we have put on a mask because often that mask is for our protection.

I realized that I have unintentionally had a mask for a couple months online with everyone I keep in touch with online including my chronically ill friends (which is rare) as exemplified when I candidly discussed My Journey With OCD . In general, I have a lot of challenges with my illnesses and I share those; I also choose to focus on the joys in my life. I feel my Facebook statuses and blog posts reflect both. But, I don't tell the absolute nasty truth every day to every person.

There are so many reasons why, but the first one is that generally people don't and can't handle the truth. I learned to measure what someone really means whey they say "how are you?" because often times it is a question they don't want the real answer to. There have been times when I've shared my reality nad I've seen people pull away.

I am not sorry you cannot handle to hear about my life. I have no choice.

Second, when I do share how much I am suffering, people think it is an opportunity to share with me what they think I should do about it. I think I speak on behalf of everyone who has chronic illness that in this specific scenario, we hate this and find it incredibly hurtful. When a chronically ill--let me say that again slowly chron-i-cal-ly ill person shares about their suffering, what they need is encouragement/love/support, not an "idea" you heard about somewhere. As Ecclesiastes in the Bible says there is a time for everything; when someone reveals how deeply they are suffering, that point is NOT the time to be the umpteenth person to say "Have you tried/heard about XYZ?" 

Daniel Hurley, MD wrote a phenomenal book called Facing Pain, Finding Hope: A Physician Examines Pain, Faith And the Healing Stories of Jesus. He wrote,

Even as we acknowledge the power of positive thinking and the presence of true grace, our human spirit can endure only so much before it is beaten down from its long-suffering.

This excerpt explains why lately, I have had a mask on to most everyone in my life except for George.  I am beaten down. I am fragile and quite vulnerable: my body's betrayal & abuse, my situation, my jail cell, the nature of my illnesses. I am in survival mode. "Kelly Protection Mode." Lately almost daily, I ask God if today might be the day he would free me from this body and every time He says "No, I have plans for you." With His grace, I respond with "Okay. I trust you. I am listening." (Please note: I am not suicidal. I love my life. I'm just really weary. And I know God understands and can handle my weariness.)

Did you see George? Did you see his face? When I look at his face, it breaks my heart.

Beaten down. Long suffering. Need love. Need encouragement.

Mask back up. For my protection...

Friday, January 20, 2012

"Project Migraine Hope" Takes Flight

Announcing the launch of Project Migraine Hope's website!!!

Calling ALL individuals (Migraineurs, Family Members, Friends, Co-workers) who have been affected by Migraine disease, please come and share your story at Project Migraine Hope!

Stories will start being posted on Monday, January 23rd!

Let's create awareness together and let's share hope!

Monday, January 16, 2012

I Have a Dream... "Project Migraine Hope"

Happy Martin Luther King Jr. Day! Today I want to honor Dr. King by sharing with you all about my own dream. I am nervous to step with faith as the only person I've shared this with is George. But I feel so passionate about it and so excited that the I can only thing I can do is dive in. Are you ready? Let's go!

I have been brainstorming ideas with you all on how to get more signers for the Alliance for Headache Disorders Advocacy petition to urge Congressional hearings on the impact of Migraine and Headache disorders in my last two posts part one and part two. While brainstorming, I saw that other communities have done video projects to create awareness around a certain topic whether it be health topics, LBGT issues, bullying and the list goes on. You can see a 2010 article by Sarah Kessler: 5 YouTube Projects that are Making a Difference. I found watching these video projects very inspirational and motivational.

I have decided to start video project for Migraine disease that creates awareness by giving a face and a voice to Migraine disease and has a message of hope.

I am calling it "Project Migraine Hope" 

Migraine is something that many people think of and dismiss as just a headache. But we know it is more than that. In many cases, such as mine, Migraines are chronic, debilitating and disabling. It creates a great burden on the individual and those around them.

So far, the numbers have been rising slower than we'd like on the AHDA petition. As I stated earlier, I would like Project Migraine Hope to be an avenue to give a face and a voice to those individuals who would be affected positively by a congressional hearing (the goal of the current petition) and every other future Headache/Migraine advocacy initiative. It is my hope that the personal nature of this project will bring compassion and greater awareness to this disease and those who suffer from it.

I am looking for individuals who have Migraines (chronic or episodic) and for loved ones/caregivers of those who have Migraines of all ages and backgrounds to share their stories with Migraine disease: the good, the bad and the ugly via a video submission. Often times, we put on a mask, but let's tell the world how it really is!

If you know me, you know I am about Hope. Therefore, I want this to be about hope as well: sharing our hope for positive outcomes in the area of funding for research and also reaching out to fellow sufferers in sharing what hope we hold onto when times get tough.

So many of us have been in a place with our Migraines where we have felt depressed, devastated and lost: when nothing is helping and you are lying alone in a dark room with excruciating symptoms; after another medication trial failed; when insurance did not cover a treatment; when the doctor said "I don't know what else to do" and/or "It is all in your head"...

We need to share with each other how we hold onto hope and to talk about what keeps us going amidst the struggle during dark times.

There IS hope for the area of more funding for Migraine research. And there IS hope for each individual Migraineur.

Are you with me? Do you desire to create awareness about how this Migraine disease has affected you or your loved one's life?   Let's create a spirit of hope among the community with individuals sharing with each other: "There is hope."

Let's tell it like it really is. Let's dream with hope. Let's live with hope. Because there is hope.
Migraine hope.

What do you all think? Are you in? Do want to be a part of this? Let me know in the comment section your thoughts about this project.

As there might be some confusion because my personal blog has a tag-line that indicates I am a Christian. I want to make sure that everyone knows that  Project Migraine Hope is non-denominational and persons of all groups, faiths and affiliations are encouraged to participate! Everyone's story is important!

In the next few days, I will be posting on guidelines of how to be a part of Project Migraine Hope, guide you through making/submitting your own video for contribution to Project Migraine Hope  and will let you know when I will start accepting submissions!. I also intend on moving Project Migraine Hope to a new website. Stay tuned for that information.

OH! And by the way, if you have not yet looked at or signed the AHDA petition (which takes a minute), please do. Click here. And a reminder when you sign the petition: it is a legal document, so make sure you provide truthful information (i.e. no phony email addresses).

Thursday, January 12, 2012

AHDA Petition Signing Brainstorm Part Two:

It has been a cranky pants kind of day here in my house. My anxiety level is high, my OCD is knocking and I'm extremely depressed. It is not surprising given how difficult my life is right now. But, my husband shared with me something today that lived my spirits and I want to share it with all of you.

My Exciting Story:
As I mentioned in the update to my last post, George had handed out a few of the petition flyers to people who he works with that frequently ask about me. This week, he has continued to do so. What really touched me was when he gave the flyer to his boss. George's boss was shocked that there is so little research being done for Migraines and Headache Disorders. He told George that his mom had Migraines and would frequently hole away in a dark room for days.

His boss entered his office today to hand the flyer back to George thinking it was George's only copy and told George he had signed it. (This brings tears to my eyes.) Again, he said, "With how many people have Migraines, you would think that there would be more research." When George said that he had plenty copies of the flyers, his boss said that he wanted to keep his flyer so he could pass it on to someone else. (*tears*).

Maybe you are thinking: This won't work in my situation. It cannot help to ask! Go to your boss and ask them or just go to your co-worker friends individually. Maybe bring it up while you are discussing your health or if someone asks you how you are or if they can help you. 

Petition Link: HERE
AHDA Flyer Link: HERE

While brainstorming about raising awareness for this petition, I have come up with an idea that I plan on announcing it Monday HERE, so please keep your eyes peeled. I am extremely excited about it.

Let's keep this going! Let's keep brainstorming!

Some Great Things I've Seen Happening:
  • Michelle at HealingYew is going to be putting the petition in the first edition of her January newsletter, New Yew News
  •  Allison from Allison in Migraineland told me that she had made a flyer on her own initiative that she's been putting up all over the area and attached to the bottom the petition address that people could tear off as a reminder.
  • A few people have mentioned that they have asked their Migraine/headache specialists if they would post they flyer. One woman said she took the initiative to fax it to her specialist's office adn they told her they needed to get it approved by legal first.  So it is worth the ask!
  • People are not letting awareness of the petition die on their Blogs, Facebook or Twitter. It is alive and well and I see people make comments on their FB posts saying "I signed." Yes!!
Let's stay positive! Let's stay motivated!  As of this moment, we are at signer number 4301!! Could you or your family member or friend or colleague bring us to 4400...5000...10,000...15,000, our goal of 20,000 and beyond? It may seem like a big number, but it is attainable. 37 million Migraineurs and their loved ones. We've got this one.

We all have a reach. Let's use our arms to reach out to those around us! We are responsible for this. Let's make it happen!

Got some more ideas? Something crazy or something simple? Doing something to promote this petition? Please let me know in the comment section! I love to hear what people are doing.

Saturday, January 7, 2012

AHDA Petition Signing Brainstorm

So many Migraine advocates are banging our heads (OUCH!) about how to keep the numbers rising of people signing the Alliance for Headache Disorders Advocacy petition to urge congressional hearings on the impact of migraine and headache disorders. We currently have 3695 signers and need 20,000 by March 27th as that is when the petition will be brought to congressmen at the annual Headache on the Hill event.

I'm looking to brainstorm more ways of what I can do to raise awareness about and motivation to sign the petition in the Migraine community and outside the Migraine Community.

What I've done:
  • Posted all over Facebook the link to the petition, so many times that I'm sure my "friends" want to whack me with a virtual noodle Family members have re-shared it on their FB pages; not so much luck with non-Migraine "friends."
  • Shared on Twitter (my handle is @flywithhope)
  • Written blog posts about the petition
  • Shared blogs on FB of others who have more knowledge than I do about the petition an its development such as this one,  Living With Migraines - Thoughts on a Sunday, from Teri Robert, who is a part of the Board of Directors executive committee of the AHDA,
  • Emailed family and friends that are not on FB or Twitter.
  • In late November I brought the petition into my headache specialist's office and shared it with him. (He was completely unaware of it.)
What I plan to do:
  • On the AHDA website, they have a link to a flyer (check it out!) they have made about the petition. My husband has expressed willingness to share it with concerned co-workers who are well aware of my disease, bring him Migraine related articles when they see them, and frequently ask him about me.  George is an actuary (not in the health care field), so this could be applied to any workplace, given one has gotten permission from his/her boss first.
  • I plan on bringing the flyer to my headache specialist's office and to every doctor I go (that's a lot!) to and ask them if they would be willing to post it. (My headache specialist has fliers for other things such as the Rewrite Your Day Campaign, so it is worth it to ask.)
  • Continue talking about it on social media and my blog.
UPDATE- My husband passed out the flyer to a few people at work on Saturday (he's in his busy season) and they reacted very positively to it. I'm really excited that this could be a new avenue for people to take action as our caregivers/spouses/loved ones and those who are friends with them know this could impact them in a positive way.
What are your ideas about how to keep getting the word out to those who may not have heard it yet, have not signed it yet, or do understood why we need this petition signed? Have you signed it yourself? If not, that is a great place to start. It takes two minutes. Click HERE to read the petition.

I look forward to hearing from you:  if you have signed it, what you've done to promote awareness for the petition, what you're struggling with and your ideas for what you are going to do to keep getting the word out.

 Please see AHDA Petition Signing Brainstorm Part 2 for a follow-up of what people are doing!

Wednesday, January 4, 2012

What Does it be a Warrior?

That is the question I am asking myself right now.  I grew up knowing that my name meant "warrior" because my parents had framed calligraphy of all our family names and what they meant hanging on the wall of our family home. If you do a search on meaning of Kelly, you will find "war, strife, bright-headed".  I was bright headed as a child.
Thankfully, that precious little girl has no idea what is ahead of her.

I do not feel like a warrior at all right now. I feel weak and scared and defeated and overwhelmed.

Thankfully the definition of a warrior according to Merriam-Webster is broadly put, "a person engaged in some struggle or conflict." I say thankfully because 'warrior' seems like such a strong word, but only because we attach that meaning to it. A person engaged in the struggle must be endlessly strong. Right? Wrong. However in reality, warriors get tired and overwhelmed. Though I do believe if someone is in engaged in a struggle or conflict, they must have some inner strength (or be relying on the strength of another) if they are still fighting. But, warriors need rest and rejuvenation.

So, my dear readers, whatever conflict or struggle you are engaged in, know that you are a warrior. We can be weak, stressed, broken, abused, overwhelmed, kicked down, and afraid. Chronic illness does not take a break in fighting, but we need to give ourselves permission to take a break to renew our minds,our bodies and our spirits even if it is simply in minutes of  resting our minds in a cozy chair with a warm cup of tea or perhaps a bit more like settling in with an inspirational book, for me: the Bible or a whole weekend devoted to rest. And then we must make sure to stand back up again emotionally, spiritually and physically. (Can you tell this pep talk is for myself?)

Look in the mirror and know you are a warrior. And do not forget to look around. You are not alone.

Sunday, January 1, 2012

Chronically Missing Out & Chronically Living

As the Rewrite Your Day campaign for chronic Migraine awareness demonstrates, people with Chronic Migraine sadly miss many events that are important to them because of this illness: big events and little moments. The first of several winners in the Rewrite Your Day Campaign had a Migraine that disrupted her whole wedding day. Her prize was to have celebrity event planner, Mindy Weiss, plan a ceremony where the winner and her husband had a vow renewal "wedding" ceremony of their dreams. Click here to see a bit of video of the occasion.

The holiday season of Thanksgiving through the New Year, brings many events big and small that Migraineurs and those with other chronic illnesses miss out on and probably wish they could rewrite. As the December 2011 Headache and Migraine Disease Blog Carnival demonstrated, we work hard to decrease triggers to prevent these situations. But inevitably, we will most likely face an event that we will miss out on or weigh heavily on whether or not we should push ourselves to attend only to regret it later.

George and I went to Kentucky for the Christmas holiday this year for ten days to be with my family. We almost did not make the trip because my health was so poor, but George muscled through packing our Honda Civic Hybrid to the brim, carrying myself and the three dogs into the car and driving the 5 1/2 hours (yes I do believe he was going pretty fast) to get there.

Making allergen-free cookies with my dad.
I had many wonderful moments of being with family: making cookies, doing a puzzle, talking with my sister-in-law, watching movies, going out to eat for the first time in months(!!!) and being present for Christmas morning's gift exchange.  A dear friend from Cincinnati who had a miracle baby in September came to visit and ran to me once George had opened the door as we hadn't seen each other in almost five years. So many precious moments.

I also missed out on a lot, but I'll only mention the big things: spending the extremely special times with my family of Christmas Eve, Christmas Eve dinner and the second half of Christmas Day, spending time with good high school friends I had not seen in a while and meeting their children.

As I laid in my bed all Christmas Eve day, and during special Christmas Eve dinner, I could hear my family's voices echo through the house. I could picture what I was missing in my head: the food, the lively conversation, the smells. I only go to my parents' for Christmas-time every other year so it is a big deal for me to miss such meaningful times.

I allowed myself to be sad, to cry, and to be disappointed. Not being able to spend time with my family; friends during important times is something to feel grief about and to vent about. But, after crying and saying a few choice words directed to my body and to God, I made a decision not to feel sorry for myself and to limit my pity party.  After the pity party, I decided that I needed to focus on taking care of myself.  I made the choice by telling myself that this is just one day--an important day, but in the long run, I have other days I can make just as important.

My conditions are chronic, so unless I am some day miraculously cured of everything,  I am not going to avoid having bad days health-wise on days that are significant to me, like Christmas Eve or a friends' wedding or an important get-together. Finding acceptance with this has helped me to go through disappointments with less stress and even a bit of peace. I have constant pain, chronic Migraines and several chronic illnesses that incapacitate me, yet I still have choices, even if sometimes it is only a choice of how I view my situation. But that is a big choice.
My brother, sister-in-law, myself, & George (not pictured my parents and uncle) at a restaurant!
And then on days, parts of days, hours or a handful of minutes where I am able to participate, I make an effort to make them as meaningful as possible.