Skip to main content

Day 14: Spread the love! WEGO 30 posts in 30 days

 Thank a few of your fellow Health Activists for what they have done. Call them out by name or twitter handle. Share your love

When it comes to migraine awareness and activism I have to thank Teri (@trobert), Diana (@somebodyhealme), and Ellen (@Eschnak). I love for all the awesome information there. You guys are seriously awesome and over the years have provided me with a great deal of support and so many answers in all platforms (blogs, tweets, forums, sites... you name it)

Also and Gueneviere Wolven who helps with a few migraine groups including the Migraine Action Coalition and recently started Migraine Misfits. I'm helping out with content on Migraine Misfits.... you know because I'm such a misfit. Gueneviere is an awesome person and is just very caring and compassionate... I enjoy being in her support groups because of the overall atmosphere she encourages.

And @migrainecma which is part of Chronic Migraine Awareness founded by Catherine Charrett-Dykes, a non-profit organization. They have a great support group on facebook, blog advocates such as myself and of course the non-profit organization to raise awareness and funds for research.

To all the people I love to follow on twitter @themigrainegirl, @emilymword, @MigraineInt, @TDblog, @migraineTalk, @migrainewarrior, @infiniteknot, @BetsyBlondin. All of which are migraine related but that is because I just have been recently adding FM related twitter ones to follow and most of them are organizations. I do a lot of FM research for articles and recently have been joining as many sites on Facebook as I can find to find other advocates but don't really know any like I do in the migraine area... except the bloggers and tumblrs I follow of course.

Pick a few of your favorite #HAWMC posts so far and share them with your readers!

I love this FM related one from Fibrofrog on tumblr called HAWMC #7: Debunking the Myth that Fibromyalgia and Depression are Connected I love it because this is a pervasive FM myth and still common with doctors. A dangerous myth because many people with FM will not dare to suggest the pain is getting to them on any sort of emotional level lest their doctor go 'well, then mystery solved... you're depressed and don't have FM at all. Here is a boatload of happy pills'. I had say I was chronically depressed... I was fairly certain the pain was an issue and yes I was having problems coping with the pain, but how about we address the pain? Nope. Clearly he understood my emotional state and the cause of it better than I did. This was prior to diagnosis so... very common for a doctor to look at a young woman in pain with chronic insomnia and say 'ah ha... depressed'. I feared the label of depressed for years and years because they want to put you in this 'mental and therefore all in your head box' and not 'physical pain and therefore actually need to treat box'. So you have to somehow say... yes the pain is bad, describe the pain calmly and in detail but also be 'stoic' and 'i'm totally not losing my cool here' in which case by the way, they won't treat the pain. Studies have shown, repeatedly, FM pain and FM is not related to depression. Now she also brings up the very large rate of suicide with FM. Keep in mind depression is comorbid with FM, any sort of chronic pain, chronic insomnia situation is going to mess with your serotonin levels... just the way it is. AND when it does occur we should feel safe enough with our doctors to mention it without them going to the 'all in your head crap' because depression is serious itself. Also keep in mind suicide rates are high in many chronic pain conditions... like chronic migraines. You have chronic pain... not very good pain management, poor sleep, possibly are depressed, possibly just in a crapload of pain and suicidal ideation is going to occur.

This is an animal one from Choniccurve on Tumblr Health Activist Writer’s Month Challenge 2013: Day 08 Where she chooses a sloth and honestly if I had not chosen what I had (I have a thing for fictional creatures... must be all that fantasy fiction I read) I would have chosen this for FM. But what she says is hilarious "Driving down the beautiful city limit roads of Tallahassee today with my roommate/good friend, Stephanie, I remembered today’s post. And couldn’t think of a single animal without making it into a joke.So Stephanie also being a writer, I asked her what animal would be the perfect representation of my diseases.
Her immediate response?
A. Dying. Sloth.
Because apparently I have told her on numerous occasions that I feel like a dying sloth. Apparently I was also either half asleep or medicated, or both."

Popular posts from this blog

Signs the pain is getting the best of you

100 Symptoms of Fibromyalgia

There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.

__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Hoarseness
__ Tender or swollen lymph nodes (glands), especiall…

When I say I am good

When people ask me how I am feeling 99% of the time I am lying. I often say 'not bad', because I feel it is slightly more honest than 'good' or 'fine'. Got sick of fine. Anyway, I lie for many reasons. 

I'm having a good pain day: They happen and I'll say that I'm good, fine, not bad. I even feel like I can accomplish great things... in moderation. In which case, relatively speaking, for Me I am not actually lying. This is a Good pain day, it is Not Bad for me and I am Fine with it. I just don't want to explain: I just don't want to explain how crappy I feel and in which way I mean. Because I am tired of it. I just want to deal with it, without having to discuss it, mention it or have any sympathy expressed about it. Because it can be complicated. It may be a migraine with specific symptoms. Maybe it is a FM flare though. Or both. And then I have to explain what it is because most people think my migraines are the main issue but I could be FM…