Wednesday, December 28, 2011

Random Notes: MRF, Petition, and Wego Health Judges Panel

Migraine Research Foundation:    
Thanks to the generosity of an anonymous donor, all new donations made to the Migraine Research Foundation this last week of the year, December 26-31st, will be matched dollar-for-dollar! That means your gift of any amount will double its value to Migraine Research Foundation! $10 will become $20; $50 will become $100. Every dollar counts

Your donation strengthens our mission to invest in critical new research -- the only way to prevent migraine, develop effective treatments, and cure it! With your help, we can continue our fight to end the debilitating pain of migraine and help the 1 in 4 American families affected by this disease.

Since all of their costs are underwritten, 100% of your donation goes to fund research and support sufferers!
Urge Congressional Hearings on the Impact of Migraine and Headache Disorders
I want to remind you of the Alliance for Headache Disorders Action Alert I shared about in a November post. This petition is a real petition that Migraine and Headache Disorder Health Activists will be taking to the AHDA's annual Headache on the Hill event in Washington DC in March! The first step to getting funding  for research is to get awareness which is what this petition is for: getting a congressional hearing on the impact of Migraine and headache disorders on the individual but also the country. It takes two minutes to sign this petition and can make a huge difference. Please take a moment to read it, be horrified at the statistics, sign it, and pass it on to your friends/family. If we do not stand up for ourselves, then we have NO right to complain.

Announcing the Wego Health Activist Awards Judges
I'm really excited to share that I have been selected to be a judge for the Wego Health Activist Awards. As a reminder, you can keep nominating for the ten different awards up until December 31st!   This year I have found my passion to be more involved in the health activism side of my disease and pleased to get to read and learn from the health activists that were nominated.

Friday, December 23, 2011

Health Activist Awards from Wego Health

I wanted to send  out a reminder for those of you have not heard or for those haven't had a chance to participate yet.

The online health community and WEGO Health are be celebrating all the awesome achievements made in health leadership and patient advocacy in 2011! WEGO Health,a different kind of social media company dedicated to empowering Health Activists, has just launched the first-ever Health Activist Awards program, to recognize Health Activists (both new and established) for all of their great work over the course of the year. 

This interactive program lets everyone get involved by nominating their favorite Health Activists and sharing what has inspired them, moved them, and made a difference in the online health community.  I have nominated some of my favorite Health Activists and I hope you’ll take some time to recognize your favorites too. Anyone can make a nomination!

You can check out WEGO Health’s Health Activist Awards 2011 homepage for details on the 10 different awards and to find out what Health Activists will win if they’re chosen.

Nominations will close December 31, 2011 and winners will be selected in early 2012 - so get your nominations in now and celebrate the Health Activists that have made the biggest difference to you in 2011.

Monday, December 12, 2011

December 2011 Headache and Migraine Disease Blog Carnival

Welcome to the December 2011 Headache and Migraine Disease Blog Carnival

The Headache & Migraine Disease Blog Carnival has been created to provide both headache patients and people who blog about headaches with opportunities to share ideas on topics of particular interest and importance to us.

The theme of the December carnival is "Reducing Holiday-Related Migraine Triggers: Share your best advice, tips & tricks for minimizing triggers while still fully enjoying the holiday season." Please keep reading for the submissions on this topic.

Nancy Bonk shared December 2011 Headache and Migraine Blog Carnival posted at Migraine and Other Headache Disorders. In her post, Nancy shares her plan on how she will be avoiding holiday triggers this year including something new she’s trying that is helping her to be more self aware and take care of herself better. Read her post to find out more about her new approach to self-care regarding triggers.

Diana Lee shared Migainuers: Have Happier Holidays with Routines posted at Somebody Heal Me.  Her post has many great tips on how to minimize triggers through keeping to normal routines. I found it particularly helpful when Diana challenged readers to consider the topic of expectations where among other things she encourages readers to respect their limits even during the holidays. Click on her post to discover other thoughtful ideas to keep in mind for minimizing triggers and having a happier holiday.

Migrainista shared Planning For a Holiday Plan posted at Migrainista. In her post, Migrainista discusses a commitment she has made to herself on how she is going to approach the holidays. Check out her post to find out about her vow to herself.

Teri Robert shared “Bah humbug” to Holiday Migraine Triggers posted at Putting our HeadsTogether. In addition to listing a variety of resources, Teri discusses the need to be proactive in having a plan for the Migraines that will inevitably be triggered during the holidays. I imagine the title of her post will draw you in as it did me.

Jamie Valendy shared Reducing Holiday-Related Migraine Triggers posted at Chronic Migraine Warrior. In her post, Jamie discusses a list of triggers we can control and a list of triggers we cannot control. She shares tips on how to approach and manage each one. I found it intriguing that one of the tips she listed under our control is stress and thought her tips on this topic quite helpful to keep in mind.

Rebecka  shared Getting organised: My migraine kit posted at teenmigraineur. Rebecka, a first time and very welcome contributor to the carnival discusses her preparation for an exchange trip to France for the holidays and what she will be including in her migraine kit she will be bringing with her. My favorite off her list of what to bring was “a cute face washer towel with a picture of tweety bird and a lamb on it” as she plans on using it to wrap an ice pack and to cheer herself when she’s not feeling well. Find out what else Rebecka plans on bringing as a part of her migraine kit.

Thank you for all your submissions and ongoing support of the carnival! 

Submit your blog post to the January 2012 edition of the Headache & Migraine Disease Blog Carnival by sending your submissions to Diana Lee by email. (Unfortunately some of us have had problems with the submission form on the site from time to time, so I suggest you just avoid it. I apologize in advance for any inconvenience.) 

The theme will be: "What do you resolve to do in 2012 to manage your migraine disease?"
Submissions are due by midnight (the end of the day) on Friday, January 6, 2012. The January carnival will be published by Diana Lee at Somebody Heal Me on Monday, January 9, 2012.

Sunday, December 11, 2011

Dear Fellow Bloggers: Will you Consider Disabling your CAPTCHA?

I have participated in Patients For a Moment Blog Carnival, which Sharon Wachsler has hosted twice in the last few months, first at her blog After Gadget and most recently at her blog Bed, Body & Beyond. When she calls for submissions, she asks that bloggers disable their CAPTCHA: the little word you must spell before some is allowed to comment. Sharon shares that this CAPTCHA is a huge hindrance with those with multiple disabilities. Often there is a handicap/auditory button, but if you try to listen to that, most of us cannot decipher them.
Sharon wrote a great post on this on this called Waspish Wednesday: Dear Fellow Bloggers About Captcha, that I will refer to you for more information on why CAPTCHA is so important to disable your CAPTCHA. I will also refer you to a recent post she wrote, Waspish Wednesday: New Wrinkle in CAPTCHA Problem.

I participated in both PFAM's that she hosted without knowing that I had CAPTCHA on my blog as I do not have to fill it out when I comment on my own blog. I am using Blogger's new format and found that I am completely unable to take it off in the new format.  I had to switch back to the old format to disable it and then switch back to the new format and it worked! I still am able to moderate comments, but those with disabilities are also now able to access my blog & comments without hindrance.

To disable CAPTCHA with Blogger, switch back to Old Blogger by going to the "Blogger Options" cog icon underneath your photo on the right side of the page. A drop down menu will appear when you click on it. Click on "Old Blog Interface."  Once in the Old Blog Interface, go to "Settings" Tab then under that go to the "Comments" Tab. Scroll down to "Show word verification for comments?" Select "No." Save settings. Go to top of page where it says "Try the updated Blogger interface" and you are set.

Please consider disabling your CAPTCHA if at all possible!

Thursday, December 8, 2011

Last Call: December 2011 Headache & Migraine Blog Carnival

Please don't forget tomorrow is the deadline for submissions to the December 2011 Headache & Migraine Disease Blog Carnival. Our theme for December is "Reducing Holiday-Related Migraine Triggers: Share your best advice, tips & tricks for minimizing triggers while still fully enjoying the holiday season." As always, posts on any topic related to migraine disease or other headache disorders are also welcome.

Entries are due by midnight (the end of the day) tomorrow, Friday, December 9th, and the carnival will be postedhere at Fly with Hope on Monday, December 12.. Please email all your submissions to Diana Lee (somebodyhealme AT dianalee DOT net).

Please note: Unfortunately some of us have had problems with the submission form on the site from time to time, so I suggest you just avoid it. I apologize in advance for any inconvenience.

I look forward to reading your entries!

Tuesday, December 6, 2011

Trigger Point Acupuncture for Fibromyalgia

Late July, my fibromyalgia flared really horridly. When it gets to the back of the right side of my head and goes down the right side of my neck and into my shoulder, I am doomed. I medicated myself with muscle relaxers, NSAIDs and Norco to no avail for a week before I called my Migraine/headache specialist who also treats Fibromylagia. I asked for a medication and a non-medication treatment. He recommended TPA (Trigger Point Acupuncture).
First TPA treatment July 2011
I had had one prior experience with Chinese acupuncture and it was not a good, and quite painful one, so I was dreading this visit with the Nurse Practitioner for TPA. Since my Norco was not even touching the severe pain, I did not expect little needles to do anything. But lo and behold, those little needles were my miracle. I saw some relief immediately. I could not believe it. My pain had moved from severe to moderate after ten minutes of treatment! It took a few weekly treatments, but eventually I was pain-free in the area shown in the picture above. The rest of my body was another story..

After a quick search, I could not find any good references for TPA and Fibromyalgia, but I found an excellent website that explains myofascial (myo=muscle; fascial=skin covering muscle) pain which can coexist with Fibromyalgia. After reading about myofacscial pain, I believe that is what is happening in the right side of my head, neck and shoulder.

To understand TPA, you must understand that Fibromyalgia has trigger points and tender points. According to Dr. Ian Pardoe who wrote the content for the aforementioned website,
Trigger points are “nervous hot spots” which cause muscles to become abnormally sensitive. This nervous excitability results in the development of tight bands of muscle or fascia that, when pressed, cause local pain, as well as referred pain to somewhere else in the body. Trigger points are essentially nervous excitability in a muscle.
This also explains why massage makes my Fibro pain much worse. A Fibromyalgia flare started Monday with pain in many of my joints including my hips, knees, ankles along with what I'm self-diagnosising as myofacial pain in the right suboccipital region of my head, down the right side of my neck and shoulder.

A phone call to my NP yesterday morning got me a 1pm TPA appointment. I also get TPA for my Migraines/CDH as shown in the photo below. I usually get TPA along with cold laser therapy every three weeks.
This photo was taken in August 2011; Last week, I had 20 needles and most were in my right temple.
Usually when the needles are put in, I do not feel them at all. I was sitting in this photo above because I also had some needles inserted in the back which you can see. Usually with TPA for Migraine I lay down and often feel like falling asleep.

12/6/11; Needles went up the right side of my head.
However, yesterday my body was not happy at all during my session. Apparently all the nervous excitability in my muscle was more than I could take. I stuck out the ten minutes so that my muscle would relax as my NP had explained it to me. But I think Dr. Pardoe explains it better:
12/6/11 Total 26 needles

"Acupuncture causes an immediate relaxation of the muscle because of the effect of the “micro-trauma” to the surface of the muscle being treated. This relaxation will then reduce a degree of the muscle spasm and consequently allow further stretching of the affected muscle group."

Thankfully I was prescribed some prednisone which seemed to help the last few times I've had fibro flares and will help the pain in the rest of my body.

Sunday night, I slept horridly because of this Fibro flare. Last night after the Trigger Point Acupuncture, I slept like a baby.

When I woke up this morning, I felt no pain. I did my Gentle Tai Chi and stretching like I do on a daily basis expecting to feel some pain. My right ankle was bothering me a bit. I took a short walk around the backyard because it was way too cold and windy to be out there without a coat on. And I was cheering inside because another TPA miracle had occured.

Mid-morning, I sat on my couch with my back support cushion behind me and with my computer on my lap began to check my emails. As I was sorting through, I noticed a twinge of pain shoot up my shoulder to my head. If you scroll back to the very first photo, it shows the line that my pain followed. I ignored the moderate pain for five minutes thinking, "oh this is expected." Then, the pain suddenly screamed up the pain scale like a speeding bullet and hit a 9.5/10.

With the exception of right after the surgery I had in March, I almost never say 10. Ten is reserved for the absolute worst, which is why I think it is ridiculous that people say on a scale of 1-10 my pain is a 12 or 100. Those numbers are not on the scale between 1-10! How can you realistically rate your pain on a daily basis if you don't use your high number (in this case 10) as the highest. I digress.

So, I stood up because obviously my posture and use of my right arm was bothering me and stupidly went to massage the area in my head. Immediate ten. It was scary. Ten is terrifying. Couldn't speak. I had already dialed George. Still couldn't speak. He waited. He knows if I don't speak it is because I am not well.

I stood for half an hour before the pain came down to a 9/10. After medicating myself, using a ThermaCare heating pad, sitting on the floor with my back support and mainly using my left hand (I'm right handed.) my pain throughout the day has stayed between 8-9/10. You can imagine my frustration. I am hopeful that sleep tonight will be as healing as it was last night. And that tomorrow I will wake up and avoid-as much as possible-the movements that created today's mess.

Needless to say, I cannot wait until my next TPA session next week.

Thursday, December 1, 2011

Writing for my Spirit

Sharon at Bed, Body and Beyond is hosting Patients For A Moment carnival this round which will be up on her site on Wednesday, December 7th.  Sharon had many questions, but her main question was "Why do you write?"

I have always been verbal and got a minor in English at Purdue in addition to my minor in Spanish and Major in speech language pathology for no other reason than I loved to read and to write.  Throughout graduate school, I had files on my computer of non-fiction books-in-progress that I wrote for fun.

I have kept a journal consistently since I was in junior high in 1991. I believe there are almost twenty in my closet. And years before I had met my husband, I started a journal in which I wrote to him (and gave it to him on the eve of our wedding). Though I had to get it out and asked to read it to him months later as he had set it aside, not appreciating it as much as I had taken joy in writing it.

Oddly the times when I didn't write were the times when I became sick with Chronic Migraine and NPDH in 2005 and for a period thereafter. It was almost as though writing for myself had become too painful. I still wish I had a document of how I felt during those times. I am particularly sad that those initial years 2005-2006 of my chronic illness was when I stopped writing because that is when I was engaged and had gotten married. I wish I could read back on how  I felt at the time about being a sick newlywed. I remember it, but it is different when you go back and read your own voice. It is like a home-movie of the soul.

I do not know if I would be blogging if I were not chronically ill, but I know I would be writing--writing what I know as Louisa May Alcott's character, Jo, finally learned by the end of Little Women. Whether it be about speech language pathology or raising children or in a journal for myself, I would have continued to write.

I was introduced to the blogging world through the Migraine community. I quickly wanted to be a part of it.  I concluded my second blog post on June 13, 2008, entitled "Gift of Pain" named after a book I had written of the same title by saying
Dr. Brand and his coauthor, Phillip Yancey wrote in The Gift of Pain, "Gratitude is the single response most nourishing to health." The reality of how the pain has affected and changed my life is sometimes difficult to swallow. But, I feel challenged to continue to find how to be thankful through and despite my pain.
One of the many reasons I write this blog is because I want to challenge myself and others to think of life with chronic illness in a different way, as Dr. Brand challenged me to think of life, pain and gratitude in a different way. I write because I want others to know that they are not alone and they do not need to be afraid to speak out about what they are going through or how they feel about it. Silence breeds shame.

Writing is a therapeutic process where my feelings spill out. Using these keys, I work through my vents, my fears and my challenges. The resulting tune may sound like a symphony or an angry dissonance of notes. Either way, it feels better out than in.

The heart and soul of why I write is because it is something that illuminates my spirit and brings me great joy. If no one ever read what I have to say, I would still write.