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Showing posts from March, 2016

Invisible no more #InvisibleIllness

Invisible illness... are invisible. Therefore doubted.

Could be that doctor that doubted the pain you were in, so didn't treat itCould be the ER that doubted your painCould be stigma by a doctor from your mental illnessCould be because you have mental illness a doctor assumed your pain was 'all in your head too'Could be a family member thought your illness was fake or not that severe as you 'made it sound'.Could be that friend that didn't think it was that serious and you were just lazy Could be anyone diminishes your experience. Could be anyone that stigmatizes you due to your illness. Diminishes the suffering you have. Minimizes what you go through.

All of which? Makes us less likely to talk about it. More likely to minimize our suffering to a doctor because they won't believe us, might think we are complaining, exaggerating, drug seeking or a hypochondriac. More likely to mask our suffering from people because of the stigma we have faced and because you …

The world breaks everyone...

... and afterward, some are strong at the broken places.

This is one of my favorite quotes. The world breaks everyone, in some way or another. And some are strong at the broken places.

Pain is an experience. Chronic pain is an extended experience. As a result re react to it, learn from it and develop ideas about it. We learn by trying to adapt to it or cope as best we can. In the beginning we just react and deal. And it is difficult. It doesn't break us, but it can. Then we get stronger as we pick up out coping skills; negative or positive ones and become stronger.

Pain had broken me from time to time. Just flat out broken me. I would like to think I am stronger in those broken places. I knew I acted on it and did the best I could to improve the situation. Maybe some of us always have broken pieces. I hope not.

Anyway, it is this idea that we can be in this pain and suffer, We can be depressed. We can almost lose that battle to the pain. And we can rebuild and be stronger from t…

Truth or an illusion they could bear to live with.

Communicating about our pain is important. They say. I'm told I should do it more. Due to the fact the higher my pain gets the more silent I get. And at more 'moderate' pain levels I try to essentially use humor to minimize the pain. You get how this can be confusing to others.

Here is a quote that sums it up for me when it comes to people in general "When others asked the truth of me, I was convinced it was not the truth they wanted, but an illusion they could bear to live with."

Because it was not just the pain, even if that person could comprehend the pain. And it is a stretch to think most people could. Unless they had their own chronic pain. It was the intensity for sure.The different types of pain. But it was also the years and decades of it that I had lived through that had taken a toll. The years and decades to come. The immense fatigue that weighted me down. The brainfog that took my concentration.

Then there was the suffering. I can't talk about th…

Switching from Full-time to Part-time... good choice, hard choice

I am returning to work after having been on leave since August 2015. Starting next Monday. Normally this would cause me a great deal of worry. How can I cope when I have not been able to cope with the pain of full time in the past? And how can I handle it mentally and emotionally long term when I am just pushing through the pain every day? What happens to the exercise routine I am supposed to be doing? What happens to the little bit of a social life I have? As per usual all that disappears. It is just work and the pain and nothing else is possible. It is more status migraines. It is missed work. It is guilt. And stress.

I know this.

I have experienced it over and over again.

Not this time my friends. This migraineur with chronic pain has finally learned her lesson. Learned her limits. The limit, the Wall, is below full-time. It is a threshold I cannot cross right now and maybe never will be able to again. We never can know what treatments will come in the future and my response to th…

#Migraine World Summit

I have been contacted by the Migraine World Summit to be an affiliate to talk about the upcoming event and I jumped right it. This is news the migraineur community should know about. These online events don't come along every day.

There is a Migraine World Summit coming soon on April 15-20th. At the Summit we can all register for free and listen to over 30 leading migraine experts, doctors and specialists. You can check out the site HERE  and register for free. It will be a great opportunity for us to hear from some of the experts about migraines and current research and treatment.

I'll post again when it is closer but I am giving people a heads up for the event and time to sign up, block the time off, set an alert and mark it down... all the things I do to remember these online events.

We can also order any of that talks after or even before on the site from HERE.

Hobbies and activities to help with self-care

These are two poems I wrote.

One thing that helps me get through the pain and the suffering is my creative pursuits. Poetry, novel writing, blogging, designing memes for my Facebook Pages. I lose myself in these pursuits. They are important to me for the sheer sake of my desire to do them. Important to me for consuming me so I don't have to think about the pain. Lets me think about something else for a bit. Something just for me. Not that I do not share my creations, but the creating itself is just for me. I also color in adult coloring books. I love to read.

And they are important to my self-care. To:
decrease stresshelp with mood regulationkeep me mentally active
 I have my thing. That thing that helps me deal with pain by absorbing me into something else. Something that is mine, not an obligation and also no one elses.

So what is your thing?

What do you do to escape from the pain?

To get beyond the pain?

To consume you and absorb you such that for a moment the pain isn't yo…

CDC painkiller regulations

C.D.C. Painkiller Guidelines Aim to Reduce Addiction Risk

Yes the CDC Guidelines are out in the States. Aiming to reduce addiction by reducing prescriptions. Unfortunate for those who have a pain problem.

In an effort to curb what many consider the worst public health drug crisis in decades, the federal government on Tuesday published the first national standards for prescription painkillers, recommending that doctors try pain relievers like ibuprofen before prescribing the highly addictive pills, and that they give most patients only a few days’ supply. Because pain patients have not already tried very OTC med they could to try and help with it before they went to the doctor already. Damn. Like ibuprofen will do anything. Not to mention the adverse affects of NSAIDs... that kill more people every year than pain killers do.

5 things chronically ill hear about appearences

Things we hear when we are chronically ill:

You're too young to be sick
You don't look sick/in pain
If you lost weight/exercised you would feel better
You look so great! Are you feeling better?

This is not to say we can't handle compliments. Just normal compliments. But we do have issues with our body.

You don't look sick. I know. I am just that... series of images #ChronicIllness #ButYouDontLookSick

I made this original image that went over really well.

'You don't look sick'

I know.

I am just that awesome that I can look this way and be chronically ill.

I made it as the best response for people to have to that 'You don't look ill/sick/in pain' So they comprehend appearances are deceiving and that illnesses can be invisible.

Anyway then I put it on a different image I found and liked.

No Matter what I do, it hurts.

This is the thought process I go through with migraines. Not my other chronic pain, because I have limits, pacing and moderation to consider there. But migraines are a different type of beast. No matter what I do, it hurts.

No matter what I do it hurts... therefore I should do nothing. I could go this way. I know I will have a migraine every day. So why should I plan anything? Why should I want to go out and torture myself with noise and people and scents and light. Then there is the drive there and back. The fatigue. Just trying to focus. I'd be miserable the whole time. At home I control the noise, the light and the scents. I am comfortable. I can minimize the pain at least.

Is it fear? Is it that fear factor that prevents us from pushing where those limits exactly are? Maybe it is a little. When migraines becomes so predictable we don't always want to deal with those consequences AND something else. It seems like overloading the senses. Maybe my migraines intimidate me some…

5 reason people give you advice about your illness

When you are chronically ill people will offer you advice and tell you things they have heard. I know we get that a lot. I know it can be frustrating. I know it can make us angry sometimes.

What we have to remember is the perspective of the other person.

They care for you. They want to help and have no idea how to do so. So when they hear about something they share it, in hopes you find it beneficial.They don't like seeing you suffer. Your pain causes them pain. They wish they could take it from you but they cannot not. So they offer advice, in hopes that is something they can offer, just a small thing instead.They want to do something. They don't know what to do or say but want to show solidarity. So they mention something they heard and they use that to show that they care about what you told them. It is an act of kindness and solidarity with your illness.They don't know you well but they want to relate to you. So they hear what you say and they have no idea what to say …

#Photophobia and desensitizing it

Photophobia is a major pain in the eyeballs for me with chronic migraines. I own 7 hats and 6 pairs of sunglasses. I have my indoor specs tinted pink for photosensitivity. I have black out blinds in the house and live in a cave. I have Flux on my computer to change it from aggressive blue light to rose lighting. Then I dim the screen.

So here is the thing. I heard a little something about photophobia and it had me changing my behavior. Mine is bad. Very bad. Migraine or not, I cannot leave the house without sunglasses. It is just too painful. So I heard this lady had a doc recommend she not avoid light and slowly train herself to more light exposure to help with her photophobia. It will not go away, but avoidance makes it more severe.

#Fibromaylgia and #stroke risk

A new study in China suggests Fibromyalgia is associated with an increased stroke risk, the study of Medicine; “Increased Risk of Stroke in Patients With Fibromyalgia,”  The researchers did a population-based study about whether FM increaes stroke risk. They used the Taiwan National Health Insurance (NHI) claims database to collect a group of 1 million subjects who were followed with the healthy controls for a three year period. (Jan 2000 to Dec 2002). A follow-up time was done for some patients and controls which continued to 2011. 

A #Review: #FibroCane Vitamins and supplements for #Fibromyalgia.

This is a review for FibroCane. They offered me two products to try for a review.

FibroCane itself is a brand that doesn't use synthetic chemicals and rather uses wholefoods. I much prefer this. All the vitamins I use are in fact made this way.

The worst lesson #pain ever taught me

I'm going to tell you a story to express my point where I learned a thing called 'push through the pain'. We all do it. Need to get something done. Have to work. Push through the pain.

Back to work @PainConcern Audio

The #Migraine with #aura

Migraine auras are a fantastical part of a migraine. Gifting us with sights unseen by others. And then Bam pain. So they are also a great warning of impending DOOM. There are some auras that are just the most spectacular thing you have ever seen. Amazing what the brain produces as that flux of brain activities presses the wrong buttons. Not to mention the weird sensation. All of sudden half your face is numb or tingling or both. Or your hearing goes all muffled and all you can hear is the damn tinnitus ringing in it.

Discussing: 5 Surprising Lessons I’ve Learned about #ChronicPain

5 Surprising Lessons I’ve Learned about Chronic Pain is a good read and worth discussing his points so lets get into them.

All Pain is real. "Chronic pain sometimes has no concrete, identifiable cause, but that doesn’t make the pain any less real.". He says that with many of us with chronic pain the Validity of our pain is suspect. Pain is of course subjective. There is no way to actually measure pain levels. "Each individual’s interpretation and expression of pain is based on a complex interaction of physical, psychological, and emotional factors, all of which originate from the brain." Therefore pain can be doubted. They can look at you with gender bias and think you are a woman therefore you are exaggerating your pain. There is no way to say my 7 is in fact a 7. In fact my 7 is someone else's 10. Our pain scales get skewed anyway just from having chronic pain. Therefore doctors should treat all pain patients at their word. My 7 is a 7, for me, therefore it i…

My #work solution is ready #HealthCompramises

I would like to say that I had a very good conversation with my employer today about returning to work after this last horrific leave experience of mine. Now generally my issues with return to work have been unpleasant and I have in the past worked with a manager that quite simply didn't work with me and my disability. And I couldn't work the position. Well, I worked the job great. When I was there. But I could not consistently Be There. The work tension and issues that evolved from that caused more stress than you can possibly imagine. It was a brutal enviroment.

This was different. This area manager and manager actually are what a disabled person wants to have at their back. They said they had my old role for me, if I felt I was ready for it. They wanted to know what they could do for me for me to be a productive member of the group. For me to do well and be well.

We then went into how the return to work would be. I said it would be 3 days a week. Alternating work day with …

Spider #venom could take a bite out of #pain

I heard about this research a while back so I assume it has now progressed. I like articles where they look to nature to find all these fascinating medical applications. I think of the first migraine abortive ergotamines made from Ergot which is a poison and in some theories was blamed for the Salem witch trials.(WebMd). To think you can take that and abort a migraine is amazing. From that they invented the triptan itself. So a lot can come from researching what nature has to offer.

In Australia at the university of Queensland, researchers have looked at the venom of over 200 spider species. The researchers have found a specific toxin in the venom of the tarantula (specifically Thrixopelma pruriens or Peruvian Green Velvet Tarantula) that shows potential as a painkiller. One that's not addictive (of course) and more effective that opioids (since those are not actually that effective for pain). The Peruvian Green Velvet Tarantula's venom inhibits pain receptors. Specifically, …