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Friday, October 28, 2016

Relentless nausea #MigraineImpact

When I was younger I would get severe nausea with my migraines. I would throw up until I couldn't throw up anymore. It was pretty severe to the point they put me on a triptan (abortive med) that dissolved in the mouth rather than a pill because the pill never lasted in my stomach long enough to work.
That symptom seemed to diminish for some time into periodic nausea and vomiting. To which I was grateful, but was replaced with bouts of diarrhea which I was Not grateful. Had to hit somewhere digestive wise apparently. No winning.
Then about a year and a half ago the nausea returned. And it didn't go away. At all. Ever. Constant relentless nausea. Some vomiting, but I loath this so mostly gagging and trying to prevent myself from tossing my cookies and sometimes losing. But nausea so severe I had no appetite and had a hard time eating. And lost thirty pounds. I was put on zofran 4 mgs. Then 8 mgs. And I eat it like candy. But it doesn't do much to be honest. Migraine nausea when migraines are daily is a brutal affair.
There are other things to try:
  • peppermint tea
  • ginger tea, pills, just ginger
  • motion sickness pills
  • sipping water, tea
  • blander than bland meals... the odor you see gets to us.
Basically I do all of the above and my zofran and barely manage it. Thus the weight loss. I mean food is so not appealing to me now. Keeping it down is a struggle. But I eat a little and immediately regret that choice. It is a necessity, but not a joy at this point.
I don't think people truly get how horrible migraine related nausea can truly be. I am currently trying to get on leave from work but at work I would throw up three times a day... and I am not the sort of person that does that and looks fine after. I cry when I get sick. And get all blotchy red. It isn't pretty. Not to mention I want to brush my teeth and can't. Then spend the rest of the time trying desperately Not to be sick with that constant rolling sensation, dizzy spells and vertigo. When you are driving sometimes you have to pull over to be sick. Sometimes if you are lucky you make it home just in time to get sick. Yay! Sometimes when you wake up mid migraine you are so sick you do the throw up and can't stop deal and don't make it into work on time... or get the throwing up and diarrhea deal and definitely don't make it into work. That is a migraine hellish combo that can make you drained, dizzy and shaky so you need to take electrolytes or you'll just pass right out.
I want to enjoy food again so bad. I want to just enjoy what I eat again. I want an appetite. I have cake in the fridge right now but the nausea is very intense today and no way can I tolerate sugar. But I want to enjoy some cake.
Just one symptom can cause such havoc. I have been drinking Ensure to get some actual nutrition into me. One of many symptoms. 

Wednesday, October 26, 2016

What I do well: Hermiting

Breathe in the good shitthatmakesmyday.png
I used this image because it is a great mantra to get some stress out and I have been stressed. I also have been in a substantial amount of pain due to FM flaring and daily migraines. 
And I am in Hermit Mode. 
It happens when I am in a lot of pain and also depressed. I sort of just hermit. And I hermit well. It is difficult to leave the house when that involves increasing my pain. When it involves exposing my sensitized senses to sensory overload. 
Friends invite me out and I pass. I was working recently and that was my excuse to be honest. Too much pain to go out and have to work the next day. Need to get the pain down so I can hopefully get some sleep to manage the pain the next day. So I kept declining. I went recently because I felt obliged to a friend who moved here recently... and I was so nauseated. I tried to have fun but felt so fake doing it. I had dulled the pain with a triptan but that gave me a 2 hour window before it returned. I did have fun in that window, just felt horrible and wasn't myself. I would have preferred to skip it. 
It isn't bad to hermit a bit. Sometimes it can help get a grip on the depression. Sometimes depression just needs some alone time and a plan. A plan I don't have but will. 
Sometimes the pain is a bit much and hermiting is the best way to get a grip on it with a new angle on how to cope with it. Because we can't get rid of it. It is going to be there day after day. We just need to cope with it. 
But you can never get into it too much. Give it a week or two. Then force yourself out to run an errand. Start going for a short walk at twilight if you are sun adverse as me. Go for coffee with a friend. Force yourself to get out and about. Because too much hermitting leads to isolation and can make depression worse. God knows, depression makes it easy to fall into for sure. 

Monday, October 24, 2016

Found me a troll today on my page

96% of all chronic illness is invisible(4).jpg
I always wonder why people who discriminate against disabled people seek out groups like that one Facebook to spit their hate. Seek it out. Can't keep their vile to themselves. However, they do distress people. I find them particularly funny and easy to rile up. But they need to be rid of quickly because they will and do start to insult people and that is uncalled for. No one deserves a personal attack from some random hateful little prat. Anyway, I will use him as a prime example of some stigma we still face because clearly it is still quite alive.
He said on an image that said 'Pain doesn't go away, you just make room for it'...Get off your phat ass an live with it, just like everyone else!
On an article about depression... There you have it, it's psychological. Now go see a good therapist and get back to work, you shirking POS.
On an image that said 'My pain is invisible but I am not': cry me an 'effin river you whiney douchebag.
On image that said 'stuck between Hell and Hope.' : You want to know what hell is? It's listening to you vapid brainless bloggers run on about your "pain" and every little ache you have. Don't eat like a pig, eat healthily, do some freakin' exercises, and then get a job and pay back this country for all the down-time you've gotten and sucking off the workmen's compensation, SSI and SSDI funding. Parasites!
I responded to that last one: Illness comes to us all. You'll figure it out someday. And when that day comes no one will pity you. Not to mention you have no idea what we do for our health; we actually have quite a few things including diet, exercise, physio and more we have to do ,minimum, in addition to medications. Only a moron thinks chronically ill do nothing to maintain and improve their health. The fact you came here to say that makes me think you are a very sad, little, pathetic man.

Sunday, October 23, 2016

Women with Invisible disabilities and work

The Working Mother research included case studies of women with such disabilities as Asperger’s and fibromyalgia. What distinguishes this group of disabled workers area, among other characteristics, the following:
  • They tend not to report their disability to management.
  • When they do report it, they often do not receive any accommodation.
  • They are less satisfied on the job than those with visible disabilities.
Nearly 1 in 4 who requested a flexible work schedule to accommodate their disability did not get one, compared to fewer than 3 in 10 of those with a visible disability who made the same request.
As with all disabilities, disabled women statistically fare worse at work than do men. And those with nonvisible disabilities fare even worse. Men are more likely to ask for and receive accommodation for a nonvisible disability, they face less “prejudice” during the recruitment phase, they advance in their careers faster, and they are paid more.
“Indeed, when we look at the workplace supports people with disabilities want versus what they get, we find women have ‘satisfaction gaps’ that are three-fold larger than men. In particular, women are significantly less likely to say their compensation is fair, their opinion counts, their coworkers respect them, and/or their supervisor supports them in work life balance,” the researchers write.Study: Women with invisible disabilities suffer more at work
I find these results hardly surprising. The first place I offered accommodation to my hours flat out denied me. The second place I offered several ways to accommodate me and they said 'I didn't have disabilities according to the company'... in other words no visible. However, their HR talked all about invisible disabilities and all about ways to accommodate. They also never did a workplace evaluation of my office. Promised to after working their 9 years but then canceled it.
Same company, different manager and I received one form of accommodation. A job demotion to accommodation my request for lesser hours. I could not work the full-time hours according to my pain clinic, psychologist and doctor.
As for job satisfaction that second place was a nightmare for me. The sicker I got the worse my work environment got. The worse I was made to feel for being ill. The guiltier I felt and the more stressed I became. I was demoted and promoted, and demoted and promoted. I was the lowest paid worker in my profession given the years I was there and my performance. While I, well I became suicidal.

Saturday, October 22, 2016

Between hope and hell

Stuck between hope and hell. I am in hell right now. I can't work. I can't function. Daily migraines, fibromyalgia and depression. It is depressing and frustrating. It fills with me with anxiety because I don't know if the insurance company will comprehend my situation enough to support my appeal for long term disability. Which I need due to not being able to work. But I Hope for my botox trial which will take 9 months to work and actually improve my pain in Some way. I hope that new migraine med coming on the market next year comes out in Canada at the same time because I hear it is so promising. Because I Hope for some pain relief and some return to some functionality. 
Yes, I cannot work in any outside of the house job full-time or part-time. But I Hope to find a niche online where I can work from home. It may require schooling or training or I may find something I am qualified to do. But I hope to do that in the future because it appears to be the only work option available to me that will work in any way. 
No one wants disability long term but we need it sometimes in the short term while waiting for treatments to help us hopefully function better. I am in such a bad spot with everything right now and of course I can't function outside of the house. Not with the pain the way that it is. When you try to push through pain, it simply pushes back in the worst way possible and you just end up missing work as a result. Finding viable treatments though is the first step... waiting for them, then waiting for them to work that is what takes time. Then you are still left with chronic migraines, so you still need to find viable work options, which is why working from home is what I need to seek out.
It is always hope and hell. Hope is what keeps us setting goals, trying new treatments and persisting and striving. Hell is where we Live. We need to think there is a light at the end of the tunnel. Or make a light there. So we can strive for something. So while I need to get on disability I hope to get treatment and find a remote job. What I Need though is to manage this pain. I need that bad. 

Thursday, October 20, 2016

MRI brain scans show FM 'brain signature'

In the study found the journal of Pain August 31, 2016 it looks like they may have found a way to diagnosis Fibromyalgia using MRI scans. They identified a brain signature that specifically characterizes fibromyalgia central pathophysiology at the neural system level using fMRI.
The study included 37 FM patients matched with 35 healthy controls; and it analyzed responses to a) painful pressure and b) non-painful multisensory (visual-auditory-tactile) stimulation with a fMRI machine. 
We used machine-learning techniques to identify a brain-based FM signature. When exposed to the same painful stimuli, FM patients showed greater Neurologic Pain Signature (NPS, Wager 2013) responses. In addition, a new pain-related classifier ('FM-pain') revealed augmented responses in sensory integration (insula/operculum) and self-referential (e.g., medial prefrontal) regions in FM, and reduced responses in the lateral frontal cortex. A 'Multisensory' classifier trained on non-painful sensory stimulation revealed augmented responses in insula/operculum, posterior cingulate, and medial prefrontal regions, and reduced responses in primary/secondary sensory cortices, basal ganglia and cerebellum. Combined activity in the NPS, FM-pain, and Multisensory patterns classified patients vs. controls with 92% sensitivity and 94% specificity in out-of-sample individuals. Enhanced NPS responses partly mediated mechanical hypersensitivity, and correlated with depression and disability(puncorrected<0 .05="" and="" clinical="" correlated="" fm-pain="" multisensory="" p="" pain="" puncorrected="" responses="" with="">
If this can be replicated this characterization based on pathophysiological, symptom-related brain features may enable for objective neural targets for therapeutic interventions. It looks to be about 93% accurate. 
"The novelty of this study is that it provides potential neuroimaging-based tools that can be used with new patients to inform about the degree of certain neural pathology underlying their pain symptoms," said Marina López-Solà, a post-doctoral researcher at CU Boulder and lead author of a study published in the journalPain. "This is a helpful first step that builds off of other important previous work and is a natural step in the evolution of our understanding of fibromyalgia as a brain disorder."
One patient advocate calls the use of MRI brain scans a breakthrough in fibromyalgia research.
"New cutting-edge neurological imaging used by CU Boulder researchers advances fibromyalgia research by light years," said Jan Chambers, founder of the National Fibromyalgia & Chronic Pain Association. "It allows scientists to see in real time what is happening in the brains of people with fibromyalgia. 
"In fibromyalgia, the misfiring and irregular engagement of different parts of the brain to process normal sensory stimuli like light, sound, pressure, temperature and odor, results in pain, flu-like sensations or other symptoms.  Research also shows that irregular activity in the peripheral nervous system may be ramping up the central nervous system (brain and spinal cord).  So the effect is like a loop of maladjustment going back and forth while the brain is trying to find a balance.  This extra brain work can be exhausting." 
Pain News Network

Wednesday, October 19, 2016

I own my pain

Just because you cannot see my pain doesn't mean I have to validate its existence to you. I don't owe anyone proof or an explanation of my pain. If they doubt its existence that is on them, not me. What I do need to do is manage my pain to live the best life that I can with it. And that is a damn hard job to do. Chronic pain is very difficult to manage and with comorbid depression I have a bit of a battle on my hands the best of times. I generally don't care to explain that battle. I generally don't care to express it. Or share it. And I don't have to. We have a select few who truly matter that may get a window into our existence that really matter. The rest? We owe them nothing.
Coping is a deeply difficult journey that we are on. I doubt anyone can comprehend it that hasn't experienced it. It is not just that it affects every aspect of our lives, all the people in our lives but it changes who we are as well. It is also something we have to Live with. It actually never stops. And accepting that fact is also extremely difficult. We all want a cure, but we have to accept that realistically it is in our best interests to pursue the most improvement we can. Live the best life we can. Knowing that might mean compromises we never wanted to make.

Saturday, October 15, 2016

Review: AxonOptics

"I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "
I have the pleasure to review and try out Axon optics migraine glasses. I have been looking to try these out for some time to replace my rose colored specs.Due to the fact my rose specs are just a rose tint and the Axon glasses have the FL-41 tint that has been specifically researched for photosensitivity. It has been on my Want list for some time.
I thought this picture was too perfect Not to take. How cute is that?

Here is me modeling my new specs of the Hannik model. My first impression visually was that they were too big for my small head, as most specs are. And the style suggests medium small to large, but I had not noted that. So, I assume my head is small small. I actually didn't need to be told that. I have an issue with buying glasses due to the narrowness of my wee head. Anyway, these sort of give me a Bono look as a result... which I rather like. I could use the cool factor. Well, my mom said Bono. My spouse said Elton John. Let's just say, I look awesome and leave it at that.
Second impression I like the full coverage. And to be honest I like the fact that they cover a large area visually. This whole visual field is enclosed in within the glasses so the entire area is with the filter... and that is a real bonus from my experience with my rose specs, where since they are normal specs there is obvious gaps. I always found that a limitation with my regular specs. So this particular style of migraine specs, is definitely full coverage. I think, as well, this style would make an awesome outdoor pair, so with the darker tint.
They have soft spots for the ears that makes them easier to wear long term. However due to my FM, TMJ and migraine allodynia the hugging style causes sensitivity there for me. I may have to adjust that. They have soft rubber around the inside of the frame at the front so it sits snug to your face, lets in little light and sits smoothly to the face without discomfort. Very smoothly sits to the face, letting no alternate light in there. That alone, makes them perfect. They sort of just hug the face gently.
This pick shows some aggressive light. My spouse often leaves this bit of the blinds open for the cats or he can see out. And it is very stabby stabby lighty lighty. Wearing the glasses I didn't even notice then i took them off and got stabbed right in the eye socket. So this just shows that, yes, indeed it was calming the light spectrum down quite well for me.
Here is the thing about photosensitivity. We light avoid. Because it is painful. And we wear dark sunglasses. But this actually makes our eyes adapt to that, making them more sensitive to light. Which is why these sort of specs are what we need, they are eliminating the light spectrum that is causing issues with light sensitivity but leaving the remainder, so we are not adapting to a darker environment
There is research behind this. I read about it at the time in fact. They have a list of the studies you can look into yourself HERE... it is interesting work.
Here is but one:

Specially tinted Lenses Are Effective in Relieving Migraine Symptoms and Other Photophoba Conditions

A review of photophobia treatments conducted by researchers from the John A Moran Eye Center at the University of Utah Health Sciences Center found FL-41 lenses to be effective in alleviating migraine pain and frequency, as well as overall light sensitivity in patients with photophobia. They suggest patients with migraine are especially sensitive to light with specific wavelengths, and FL-41 lenses help reduce symptoms by filtering out these wavelengths from the light spectrum.
Source: Katz B, Digre K. Diagnosis, Pathophysiology and Treatment of Photophobia.  Survey of Ophthalmology. 2016.02.001
And they work. Simple as that. The light is far less aggressive. Wearing them you barely even notice the tint but light is softer and less painful to endure. These quite simply put are a migraine necessity. And frankly I have photosensitivity even when i do not have a migraine due to FM, just not as aggressive as when I have a migraine, so these are something value to have available all the time. It is like having Flux on your computer, it is one of those aids we can have that enables us to be in areas with horrible light conditions like florescent and so forth without having more aggravation from the existing migraine or triggering a migraine. 

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