Skip to main content

Posts

Showing posts from April, 2013

Day 30 Recap: WEGO last day of posting!

You made it! 30 posts in 30 days! Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned?  It has been a pretty awesome experience. I have definitely made note of a few bloggers that I am now following on twitter, or their blog or on tumblr now as a result. Which is great. From the resources shared I have added to my own and that is also awesome. I think we have learned a great deal from each others experiences and shared our own stories. Made connections. Got through some interesting prompts that made me think.
I enjoyed all the Wordless Wednesdays... they were fun and interesting to do... as well as see.
My favorites were:
Day 4 Sharing Resources  I found this just very useful
Day 6 Letters I think writing to our illness is a great idea... get your rant on, or express yourself.
Day 7 Sensationalize The 'say what?' I can't believe someone said that to you? We have all had those. It was great to read other peoples.
Day 8…

Day 29: Congradulations! A little about me-ness WEGO 30 posts in 30 days

We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost! Huh. Hmmm. I'm pretty darn good at being modest so... there is that. I'll tell you what I like to do and you can take from that what you will! (okay after I wrote this I noticed my likes resemble my likes but there are distinct differences even if they have a similar format!) I like fantasy fiction writing and not too many people know that I write novels and publish ebooks. I don't talk about it often and publish under the pen name Michelle Mythe. You can check out the ones I have available on Smashwords if you want in a variety of formats for Kindle, html, pdf, epub and sony. This is actually a great pain distraction for me and something I enjoy immensely. Something about the escapism I suspect since I love to read fantasy fiction as well... in fact I read so much I likely spend more on books than I do on clothes,…

Day 28: Must follow Facebook Pages: WEGO 30 posts in 30 days

Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, blogs, or Facebook pages.

I'm going to stick with Facebook Pages. We already discussed resources and people we followed on twitter. People can see the people I follow on blogs here and if the go to my Tumblr the blogs I follow... all awesome for various reasons.But pages you can't see and there are some awesome ones out there.

Migraine Misfits-  Is a Facebook page where we post migraine research, resources, humor pictures, inspirations pictures. We want to promote awareness of migraines and support all those with them. I am one of a few people that do some content there, but there are a team of us.
Making Invisible Disabilities Visible This is my page so... I'm included it. My blog post automatically link to it. I also post articles of research or articles I find interesting. I add in humor pictures and inspirations pictures of course.... we all need that sort of thing. I …

Day 27: Titles- if I were to name some book titles this would be them: WEGO 30 posts in 30 days

If you wrote a book about your life, your community, your condition, or your Health Activism
what would you title it? Come up with 5 working titles.

Titles for fibromyalgia and migraines 1- Brain on Fire: when migraines and fibromyalgia merge 2- I see Sparkles: The persistent migraine aura 3- Brain of Pain: Fibromyalgia and a brain designed for pain 4- Dualism: Me and That Damned Body 5- Misfiring Brain: chronic migraines, persistent migraine auras and migraine associated vertigo working together to distort your reality.

And here are some migraine books on my reading list recommended by Diana Lee


Chocolate & Vicodin: My Quest for Relief from the Headache that Wouldn’t Go Awayhttp://www.amazon.com/Chocolate-Vicodin-Relief-Headache-Wouldnt/dp/B005EP2AMC
All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headachehttp://www.amazon.com/All-Head-Unrelenting-Unreasonable-Enlightening/dp/0738210390
The Migraine Brain: Your Breakthrough…

Pacemaker for the brain that switches off chronic pain- what an awesome idea

Pacemaker for the brain that switches of chronic pain An implant deep in the brain... but not for a specific injury, for widespread pain... and to do that, they had to target where we feel the emotional unpleasantness of pain... aware of the pain but not bother by it with this pacemaker active. It has a external control that can increase the 'volume' as needed. It is being used for stroke patients currently. Still... how freaking awesome is this. And I want one. Just saying. We all know simplistically speaking pain has two parts. There is immediate suffering, which is the physical pain itself, and we do what we can with the medications and treatments to handle this but with chronic pain there simply are limitations. Then there is secondary suffering which is the reaction to pain, which is the emotional response and how we cope with the pain onslaught and stress on the body as well as stress in life and how that affects our thinking and how we think about pain... and this is a …

Day 26: Pain Free Pass WEGO 30 posts in 30 Days

What’s a day that you wish you could have used a pain free pass (either in the future or the past)? How would being pain or worry free impact that day? My days beings so full of pain have a 'sameness' to them that a hermit gets when they are not able to do much other than what is essential and necessary. So no day sticks out in my mind except holidays. Every holiday I would have Loved to have a pain free pass... because I would have been able to Do some of the things I wanted to do but could not, or done more things. Instead I have to really pace myself and when we go places I can never walk far, or for long and it has to be at my pace. We can never do many things, because 'too much to handle' comes to mind.
I in fact have a short two day stay in the mountains coming up real soon. And I wanted to go on a guided tour of the ice caves. Three hour trip, two hour walk. My spouse just gave me this look, shook his head and said "Yeah, no, you can't walk for two hour…

Migraine aura duration.... Indeed

"Background According to ICHD-II, and as proposed for ICHD-III, non-hemiplegic migraine aura (NHMA) symptoms last between five and 60 minutes whereas hemiplegic migraine aura can be longer. In ICHD-III it is proposed to label aura longer than an hour and less than a week as probable migraine with aura. We tested whether this was appropriate based on the available literature. Methods We performed a systematic literature search identifying articles pertaining to a typical or prolonged duration of NHMA. We also performed a comprehensive literature search in order to identify all population-based studies or case series in which clinical features of NHMA, including but not restricted to aura duration, were reported, in order to gain a complete coverage of the available scientific data on aura duration. Results We …

Day 25 Learning WEGO 30 posts in 30 days

Share something you learned from another Health Activist (that everyone should know!). I have learned many things from different people with the same condition and others with different diseases.I have learned in some ways we are all the same. We have these illness that we cope with every day that affect our lives, our families, our jobs. We create these facades of wellbeing to function in the world and we have invisible disabilities and face stigma because of them. That we all desire the connection to others and to spread awareness about our disease. Yet we cope, we try to remain positive and share ways to adapt to our health challenges and share jokes to make each other laugh. So many different diseases but so many similarities. That I have seen from us as a whole.
I have happened upon some new resources from a few of you. New tricks with Pinterest from some of you. And I hope I learn more.


Share something you’d like to teach other Health Activists. I don't know if I have any pea…

Trying to plan a short trip to the mountains... and... not so easy

We are going for a couple a days to a cabin near Jasper. Just to chill and relax. Take in the scenery. Since it is only a couple of days don't really want to do too much and the season is the time of year where there isn't too much to do.

There are things you can do when you go to the mountains that sound cool... like this canyon ice walk tour. Sounds awesome. Two hour walk time. I was thinking maybe conceivable. My spouse looks at me, shakes his head and says 'two hours? I don't think that will work.' I thought sure it would if I got to take awesome pictures. Because I have been known to walk hours and ignore the accumulating pain. Of course generally that is with breaks. And then I remembered that is My pace... not others and sometimes My pace gets substantially slower and slower which would so not work in a group situation. That could be very embarrassing. Then I remembered the whole spinal lumbar back issue and it occurred to me... two hours would be insanely h…

Electric stimulation of brain releases powerful, opiate-like painkiller- trigeminal neuropathic pain

Electric stimulation of brain releases powerful, opiate-like painkiller
"In their current study, DaSilva and colleagues intravenously administered a radiotracer that reached important brain areas in a patient with trigeminal neuropathic pain (TNP), a type of chronic, severe facial pain. They applied the electrodes and electrically stimulated the skull right above the motor cortex of the patient for 20 minutes during a PET scan (positron emission tomography). The stimulation is called transcranial direct current stimulation (tDCS). The radiotracer was specifically designed to measure, indirectly, the local brain release of mu-opioid, a natural substance that alters pain perception. In order for opiate to function, it needs to bind to the mu-opioid receptor (the study assessed levels of this receptor).
"This is arguably the main resource in the brain to reduce pain," DaSilva said. "We're stimulating the release of our (body's) own resources to provide analges…

Day 24: Wordless Wednesday: Pinterest WEGO 30 posts in 30 days

Create a Pinterest board for your health focus. Pin 3 things. Share the image.

I'm fairly new to Pinterest but I do post my health articles there and my Somecards. The ones I recently posted would be...

Source: someecards.com via Nikki on Pinterest

Source: someecards.com via Nikki on Pinterest

Source: examiner.com via Nikki on Pinterest
 Which is a pin (wikimedia commons picture) based on this article: Study suggests fibromyalgia pain is caused by small fiber neuropathy 

Migraine patients find pain relief in electrical brain stimulation

Migraine patients find pain relief in electrical brain stimulation

This is not something new to the treatment of pain at all (Immediate effects of tDCS on the μ-opioid system of a chronic pain patient) and has in fact been used for all sorts of chronic pain from firbomyalgia to neuropathic to pain from chronic injury. The idea being to find the location in the brain that has been rewired by pain, pulse in this electrical current, and the areas can be in effect changed to respond differently over the treatment period. For certain types of injuries the research has been promising and it will be interesting to see if it can be useful in conditions where more areas of the brain are being stimulated and affected, such as migraines... the area being stimulated that seems to help with this treatment is the motor cortex.



"Researchers from the University of Michigan School of Dentistry, Harvard University and the City College of the City University of New York used a noninvasive method ca…

Virtual reality 3-D brain helps scientists understand migraine pain

Pretty cool if you ask me. 3D imaging of the brain during a migraine attack.

"The 3-D brain is a novel way to examine data from images taken during a patient's actual migraine attack, says DaSilva, who heads the Headache and Orofacial Pain Effort at the U-M School of Dentistry and the Molecular and Behavioral Neuroscience Institute.
Different colors in the 3-D brain give clues about chemical processes happening during a patient's migraine attack using a PET scan, or positron emission tomography, a type of medical imaging. "This high level of immersion (in 3-D) effectively places our investigators inside the actual patient's brain image," DaSilva said. The 3-D research occurs in the U-M 3-D Lab, part of the U-M Library." Hologram-Like 3-D Brain Helps Researchers Decode Migraine Pain

Day 23 Technology: gizmos and social media: WEGO 30 posts in 30 days

“I wish this gizmo could track my condition!” Write about which device, application, program, etc. you wish helped to track your health.

There are some pretty good migraine and chronic pain recording apps on the iPhone which I rather like and I find easier to use than the ones that used to be on the computer... since I can just pick up the phone rather than have to go to the computer and log into the system. And I can track my medications and appointments on there as well. I wish I could have a little portable brain scanner. Make 3D images of the brain so doctors could see the migraines or see the changes due to FM over time. That would be pretty awesome. Even better if they could develop something so that it could show how I literally see out of my eyes... all the distortions I see from my persistent migraine auras and visual snow. And then I could give that little video to the neuro and say This is how I see.The reason for that being while I try to explain how serious those auras ar…

Day 22: Day to day WEGO 30 posts in 30 days

Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism. Nature inspires me. Walks at night in the silence when no one is around. Walks by the lake, with just the breeze and the water. Going into the mountains and seeing how absolutely majestic it is with the mountains above and the thick forest around me. These things move my spirit and remind me that I am alive. That in that moment I can just Be. Beyond pain, and stress and obligations and social constraints and stigma. I can take in a deep breath and just relax. Know that there is more to this existence than just this illness. And it gives me the strength to carry on. All the Noise sometimes hinders things, but silence and nature soothes me. It fuels my soul and so it fuels my activism because you can't motivate yourself if you are bogged down by negativity let alone motivate others. Sometimes I think we all need to get away from everything and find someplace beauti…

Fibromyalgia and Growth Hormone treatment

In Overview of fibromyalgia and sleep dysfunction I stated " It can also cause the level of growth hormone in the body to be low as growth hormone is primarily distributed during stage four sleep (80% comes from delta sleep). Lower levels of growth hormone leads to more muscle pain and degeneration. Lack of stage four sleep also causes cognitive impairment or brain fog as well as fatigue and muscle aches." However growth hormone does a little more than this. The point being where we might get our low numbers comes from our sleep dysfunction. I can imagine if sleep is adequately treated such that there is refreshed sleep this might not be an issue but in many people with FM where sleep quality is always an issue the levels might be low.

Growth hormone "produced by the pituitary gland, spurs growth in children and adolescents. It also helps to regulate body composition, body fluids, muscle and bone growth, sugar and fat metabolism, and possibly heart function. Produce…