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Showing posts from April, 2014

The hermit is going to do a thing!

My birthday is coming up and so my mom bought tickets to Mama Mia to go to! However, she will not be able to come with me. She is currently under going chemotherapy and is right now starting her second batch of the stuff... it is not treating her well. I was hoping she would miss some of the more unpleasant side effects they sited but it does not seem so. I am hoping it will get better as it goes along. It is the sort of hell you have to take a day at a time until you get through it. Anyway, right now she is experiencing some nasty nerve pain. I have her the stuff I use for that but I am not sure it will help, but if it does, even a little, then that is something.

So I had to find someone to go with which was tricky given I am such a hermit but I know the friend I play card with every couple of weeks liked the movie so I asked her. And we are good to go. She is even willing to drive, even better since I don't drive these days.

I am pretty excited about seeing it. I have not gone …

A little #Furball comfort

This is my cat Charlie. He likes to wedge himself against me, nuzzle into my neck and knead those claws in there. And quite the purr machine. Needless to say I like to keep his claws trimmed otherwise it rather threads my neck quite well.

Pets give us a lot of comfort when we have chronic illnesses and chronic pain. I don't know what I do without my furballs.

New specs

I was extremely excited to get my new glasses today, which amused my spouse to no end. He didn't get it. But when someone has chronic migraines and intense photophobia you get a thing for glasses and hats, or at least I do. So these are the regular glasses with the rose tint to them. The rose tint helps me be more optimistic, ehm, I mean it helps with photophobia. Makes the lenses look a little darker but makes a real differences wearing them. Light is so much softer. And that is why I was excited to get them... because I lost my previous pair of glasses that also happened to have the rose colored tint somewhere in the house. And no, that isn't the only pair of glasses I have lost in the house. And no, I have no freaking idea where they went. The house clearly ate them. Enough said.

Either way it was well past time to get my eyes checked anyway, so there is that. My actual prescription is mild, but has in fact changed a little. I really only wear them because they might help …

Owning words and using words #PowerfulWords

I think we have all seen inspirational posters like this and there is nothing really wrong with them. They serve a very valid purpose but it just reminded me of a post about language I wanted to make because I see this sort of thing so often.

However, we know that being chronically ill does not make one intrinsically courageous. Nor does losing the battle make one a coward. I had someone get quite upset I had posted a link to an article because it used 'brave' in the title in reference to children fighting rare diseases and of course the journalist was simply trying to get more people to click on the link but she was offended I would have posted it at all because we are not intrinsically brave because we are ill. Of course we are not 'brave' or 'courageous' just because we are ill. Nor do we seem to have this inner core of strength always referenced like pain makes us somehow 'stronger'. Yeah, no. Hell, people see us as being inspiration by our mere ex…

Stewart Tepper, MD : Neurology Reviews

Stewart Tepper, MD : Neurology Reviews (Video)

"Headache Cooperative of New England

Stewart Tepper, MD
At the 24th Annual Meeting of the
Headache Cooperative of New England, Stewart Tepper, MD, discusses the
latest updates on research into neuromodulation treatment strategies for
migraine and cluster headache."



Video goes over: Discussing TMS stimulation for migraines with aura and external device. And other external devices. As well for neuromodulation for clusterheadaches which is held over the cheek and triggered to abort or prevent a attack. And vagal nerve stimulator for migraines and cluster headaches, for treatment and preventatives.

#Fibromyalgia Awareness Day May 12th

Thunderclap send out a message with thousands of others via Twitter, Facebook or Tumbler on May 12th through Thunderclap.

Facebook Page FM/CFS May 12th Awareness keep in touch with events through this facebook page about fibromyalgia and CFS/ME


National Fibromyalgia and Chronic Pain Association site"Events for National Fibromyalgia Awareness Day, officially May 12th, occur throughout the month of May.  The 2014 theme - "C.A.R.E. & Make Fibromyalgia Visible" - encourages people to Contribute, Advocate, participate in Research, and Educate others about fibromyalgia.  People with FM and their loved ones host community events - picnics, dinners, exhibit tables, walks, Zumbathons, and other creative ways - to help other people know about this invisible illness.  Hearing people say, "But you look so good," underscores the importance of speaking up about chronic pain illnesses."

Fibromodem: Events Internationally  Check out posting for events around the…

That photophobia and peristent migraine aura

I went and had my eyes checked out today and they are healthy and my prescription has changed little. I pretty much knew that but wanted to get some new specs and it has been four years since I've had them checked out. Never can be too careful when you have visual snow and persistent migraine auras because hard to say what 'normal' vision really is. So best to make sure it is all good. I also lost my pink tinted indoor specs, so needed to get them replaced. They help with my indoor photophobia a bit. And I wanted to get some prescription sunglasses. While my prescription is very mild and I don't really need to wear glasses except if I am driving at night or working on a computer it was suggested it may help with migraines. And you never know. So I figured maybe I should a nice pair of good coverage sunglasses with the prescription in them.

Sort have a thing for sunglasses if you have photophobia. All sorts of shades and tints.

I have pretty extreme photophobia. While I…

Article: What #suffering does

What a wonderful article worth reading in its entirely...  but I had to post this portion here. I know with chronic pain we know a great deal about suffering. About pain that leads to physical and emotional suffering. This changes us on many levels. It changes us in different ways at different times. And we think a lot about that. We reflect on those changes. Often seeing the negative. Often seeing the limits. However, the changes themselves reflect this strong core within us often. And what comes out of all this can be some powerful insights into ourselves and the world. That is not to say we are better for it. No, not better. But definitely changed. Definitely different.


What suffering does


First, suffering drags you deeper into yourself. The theologian Paul Tillich wrote that people who endure suffering are taken beneath the routines of life and find they are not who they believed themselves to be. The agony involved in, say, composing a great piece of music or the grief of hav…

“I laugh because I must not cry, that is all, that is all. ”

 “I laugh because I must not cry, that is all, that is all. ”
― Abraham Lincoln
Of all the famous quotes that one is rather unexpected. However, I often have said the one coping mechanism I developed to deal with chronic pain long ago was humor. It wasn't like I didn't have a sense of humor. It was just that I was a very sarcastic, cynical young person. I think maybe because I was aware of my limitations when I was young and I didn't like that fact. Nor did I like feeling tired and in pain all the time or how that affected me. It did affect how I viewed the world in general and how I looked at my options in life. How I looked at those options. I took things too seriously. I didn't let myself laugh at the simple things or act foolish for the fun of it. And I let the pain be a heavy burden on my shoulders.Which I thought about. I am a very introspective person. I think about a lot of things. Reflect on them deeply. Which is fine. But pain is one of those things that shoul…

What I think about #pain and #coping

In basic terms...


You see when you have chronic pain there may be a point in your life when the pain is moderate with intermittent points of severe and acute. In which case you find that you are coping well. You can work and maybe even have a career. Maybe not the job or career you want to have but you can do it. You can have a life and by that I mean a generally good quality of life that permits some social activity, some activity with co-workers, friends, family and loved ones. Some hobbies and pleasurable leisure activities. Within moderation and within limitations. Never what you could have, never what you want to have. But some. Enough to allow a certain level of quality of life. Enough that you have a good capacity to cope. Enough that you know you are coping.

Then a tipping point.






You may not even know right away that you have reached it. You certainly will try to deny it. Because you are coping, right?


At this stage of the game the pain is always severe and intermittently acut…

I need a #migrain #kicker tonight

I have had a migraine since yesterday that has been acute all of today. Because when I went to bed with that nasty migraine not only did I have the pain to deal with I got vertigo lying down.

Falling
not
falling
not

You get the point. On a rollercoaster ride I could not get off. It began to make me feel rather ill actually. More than rather. I needed to get up. Staggered about for a bit. Tried sleeping again. Same thing. So I got up and did some writing on the computer for a few hours. Eventually took a short hour nap on the couch.

A nap is not enough to kill a migraine like this. Sleep deprivation means migraine all day. Brutal migraine all day. Of course my tripan did nothing at that point.

However I had an appointment in the city. So the long drive did kick in the vertigo more and more nausea. So there was that. Now there vertigo is here to stay.

Still have the pain. And massively bad neck pain, jaw pain and facial pain as well.

So how does on get to sleep like this? With a migrain…

#Suicide and the selfish stigma

Stop Calling Suicide Victims 'Selfish'"According to a poll conducted in May 2013 by Gallup, only 16 percent of the country finds suicide to be "morally acceptable." But the moral acceptability is not an issue. Suicide is the tragic, distressing result of severe mental illness. By definition, it takes lives. We don't question the moral acceptability of other often fatal diseases such as cancer; we accept that they're awful and terrible and search for ways to cure and prevent them. We certainly don't attack cancer victims for getting sick. Suicide should be looked at in the same way -- we shouldn't be arguing the justifiability of the victim's actions or the ethics of ending one's own life -- we should be looking for ways to stop it.
But every time a suicide occurs, some little self-assured voice is going to attack the victim. The same victim who felt inadequate enough to end his or her own life. The same victim who found solace…

#allodynia and #migraines

"Cutaneous allodynia, pain resulting from application of a non-noxious stimulus to normal skin, is a recently described symptom of migraine, with a potential role in directing optimal treatment for migraine attacks. Manifestations of cutaneous allodynia include discomfort when combing the hair, shaving, and wearing glasses, contact lenses, earrings or tight clothing. The exact mechanism by which a migraine attack is triggered is not known, but it has been theorised that, in some patients, once the attack has begun, central neurons can propagate information about the pain process without the need for further external stimuli. This process is termed central sensitisation. The trigeminal nerves, which innervate intracranial and extracranial tissues, account for head pain and other symptoms in migraine. The first-order neurons in the trigeminal ganglion receive input from the dural blood vessels, which is transmitted to second-order neurons in the trigeminal brain stem…

Let's talk fantasy. #ChronicPain

There is thinking positive and there is completely unrealistic. Thinking positive is trying things to manage the pain and maybe lowering it in some way. Completely unrealistic is thinking the pain will end. Chronic pain really doesn't have an end date and I have understood that aspect from the very beginning. I think you try and fool yourself into thinking it won't every interfere with major aspects of your life but eventually you realize pain can be very difficult to handle. And you can always get more than one chronic pain condition.

Other people sometimes believe when we try a new treatment it will miraculously cure all our ails and I have no idea where they get this impression from. Perhaps they still have this innocent impression that modern medicine can do miracles. It can't. The pills we take are rather unremarkable. They have a ton of side effects worth mentioning but the actual effects we take them for are nothing to write home about. However, I remember back in …

Some #migraine #statistics

Migraine without aura statistics

Migraine with aura statistics  Medications prescribed (commonly)