Skip to main content

Posts

Showing posts from October, 2016

The hard truth about pain

Those of us with chronic pain on the outside look fine. People will call us lazy because we do not look disabled. They will think we are scamming this system. That we don't 'look sick enough'. That we are smiling so we 'can't be in that much pain.' Didn't we take that smiling selfie and put it on Facebook... since Facebook reveals a true reflection of our real lives then clearly we were happy and not in pain, right? Of course not. Pictures are tiny moments of happiness or they are moments where we find the need to smile to be socially acceptable. Where we are masking our pain the hardest. 

First hard truth about pain- They will doubt you. They will always doubt you. How much pain you are in. If you are in pain. Your pain number when you say it. How bad you really hurt. You have learned to mask you pain. They need pain behaviors to believe pain. But let's be honest even if you didn't mask your pain then you'd be exaggerating and comp…

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. Migrai…

What I do well: Hermiting

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 h…

Found me a troll today on my page

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 …

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 support…

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 avail…

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 sen…

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 actu…

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 …

Flaring and weather

I am in a great deal of pain. My ankles hurt, the bottom of me feet, my knees, my hips, my back, my butt muscles.  My neck, my shoulders, my elbows. In other words take a picture of me and circle it, that is where the pain is. I would call it a flare, but I can't. It had been high for months. Just getting a little worse due to the cold weather. So I had a baseline of around a 6 and now I am in about a 7. It is hard to move, get comfortable, ever, any position. Have to flip constantly, sit up, lay down, turn over, it up. It is relentless pain. Unable to rest without the pain starting and then getting worse and worse and worse until you have to move into another position...and repeat. Why is my baseline higher than usual? I have no idea. Sometimes it happens where pain just gets worse for a few years. Just happens. All I know is tramadol does nothing for it. Why is it worse than my baseline lately? Well that I think we have to look at the weather. Here is a good study to look at an…

Fatigue and Fibromyalgia

Persistent and chronic fatigue is one of the most common symptoms of fibromyalgia, second only to the deep muscle pain and body aches. But unlike normal fatigue, the feelings of fatigue, weakness, and exhaustion that come with fibromyalgia can often lead to unending social isolation, even depression. Fatigue with fibromyalgia is described as crippling, exhausting, and flu-like. You may experience fatigue on arising, even after hours of bed rest. And many people with fibromyalgia have disturbances in deep-level or restful sleep, so the fatigue they feel is not easy to treat. The fatigue with fibromyalgia syndrome (FMS) often coincides with mood disturbances, anxiety, or depression. People with fibromyalgia may describe their sleep as unrefreshing or light. Some people with fibromyalgia have pain and achiness around the joints in the neck,shoulder, back, and hips. This makes it even more difficult to sleep and worsens their daytime feelings of sleepiness and fatigue.WebMDI have been ha…

Dear Dr: The doctor who changed my life

Dear Dr: The doctor who changed my life So I have had a lot of bad doctors in my life. Man I could tell you some stories, my friends. I have also had mediocre doctors and disinterested doctors, who simply were fine for refills of medications but not much else. A good doctor is hard to find. Around here where there is a doctor shortage a good doctor is near impossible to find, because people know it and they are patient heavy and not taking patients on.  My current doctor though, she is special. I found her because I had a very disinterested doctor who didn't seem all that interested in how I was actually doing. Not willing to do any more than necessary even when things got worse. So I looked, and found no one was available to take on patients. But, then I thought about my spouses doctor who had been managing his Gastroparesis. Who in fact got him diagnosed with it and sent him to the specialist to get treated for it. The one who sent him for a MRI to check on it, just to see what …

I am not a failure

I was struggling to work. I was failing. This was making be feel worthless. A failure. And depressed. You work So damn hard to do something and you cannot function at your job, cannot concentrate, you are so fatigued mentally and physically, trying to think through the pain… that your performance seriously suffers. Then you miss work when the pain is mind-blowing level, unable to drive, unable to think, unable to move. And then you feel that profound guilt. And how much you suck. So you go on disability, or I am trying to anyway, because my emotional stability is taking a turn down. I don’t do well when I struggle to do something I just can’t and fail. I keep pushing and fail anyway. And it crushes me. And I feel my only way out is death in the end. I wanted to not get to that point this time. But you have these feelings like you are a failure. It is your weakness that led to all this. If you could just Push through the Pain more. And ignore those depressive thoughts. And come to wor…

Mental Illness awareness week

Believe it or not I try to be rather hopeful when I express things on this blog. It is my better self. It is my desire and wants and needs expressed in words. But you know I struggle. I do mention that. The pain. Fatigue. Cognitive impairments. With work. And with depression. Depression is something that has haunted me since I really manifested fibromyaliga. Whenever I really have to cope with the impact of pain it rears its head. So when i was younger I went through a pretty bad bout of it when it came to coping with FM. And it seemed to diminish. Only to raise up again with chronic daily migraines. And it hasn't subsided since, since neither has the pain or my struggles to cope with this additional pain. When I am optimistic this is what I think to do about depression:Things to consider for depression And this is the reasons I hid my depression for as long as I did, for really, as long as I possibly could: 6 reasons I masked my depression for years Two suicide attempts in I can…

In limbo

I am in a limbo of pain and depression. This place where I want to lay down and just not. Just Not. Every feel like you want to sleep for a thousand years? Yes. Or just not exist. Or aware you exist. Just want it to stop spinning… stop thinking. Stop doing. I am in a funk still with the pain and the depression. I am stressed. And I think I need to go on a leave from work soon. Just don’t know if my spouse wants that. But it has to be soon. I keep tearing up unexpectedly when I think about the pain or about work. I keep getting surges of sadness and despair. Hopelessness. I feel like he doesn’t want me to go on a leave. It is making me distraught with me choices. I feel unstable. I am tired of fighting and yet I will have to fight the insurance company. Go though all that hell again.Feels so useless with the way they look at my disability. It would be nice if I could just Be for a bit. Just be in pain and rest. Without having to work. Without any stresses. Just be. Then maybe I could …