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Friday, February 24, 2017

Reflection: knowing the game

2-5

So way back in the day, I was a kid. Back in the day of tape cassettes. Before the internet and a computer that did much of anything. Way back in the day I had pain. It is hard to even say when I realized I had pain that wasn't normal. Certainly, it isn't the pain I have now by any degree. 

I know in gym I felt it. In the knees especially. Or an ache in my joints. And sometimes it hurt to a degree that I wondered if it was right or normal to feel that way. The older I got the less I liked gym class, I can tell you that. But it I was active, which, all things considered, was the best thing for me. And as a teen, I rollerbladed a lot, which also hurt in the knees. I was tested for a long time for lupus. Saw my first rheumatologist when I was 16 and diagnosed with hypermobility syndrome (EDS hypermobility type) with chronic soft tissue pain (developing FM he said in his notes). Because I can say as a child it was just something that bothered me. As a teen, it was getting to be noticeable. I ached. I was tired all the time. I never slept well. 

Wednesday, February 22, 2017

The gift that keeps on giving (and I didn't order)

Chronicillness.png

So this was the sales pitch of the chronic illness package I got called 'The gift that keeps on giving' that I definitely didn't order.

Get now!
 
96% of your chronic illness packages are invisible. No one will know you have one! Even if you flat out say 'I have the chronic illness Fibromyalgia' they could easily respond, 'No way, you don't look sick at all.'

By the way, if you get Fibromyalgia right now it is possible we could put in IBS for Free! Bonus of Fatigue, already included. Package comes with: muscle pain, cognitive dysfunction, sleep dysfunction and a randomly selected assortment of symptoms.

While most packages do come with the Bonus of Fatigue is should not be confused with the Chronic Fatigue Package (Also see M.E.) that has significantly more Fatigue. Totally different items altogether. This CFS package comes, instead, with a Bonus of Pain.

We have quite a few chronic pain packages and to be honest when you have 1 people tend to have 2 or even 3. They are That popular.

Our chronic illness packages overall are quite popular. Often you get more than one. Sometimes 5!

And you Never need a New one because they all last forever!

Remember, these popular for all ages, not just the elderly.

They are absolutely 100% guaranteed to affect your career adversely, with either income loss, income stability or complete job loss entirely.

Some packages go together frequently. Chronic pain packages often can exist with the depression and/or anxiety package.

All packages are Nonrefundable, may cause isolation, increased stress, a noticeable amount of stigma seen in others, work complications, decrease in socialization, decrease in friends and troubles with overall functioning and coping.

Also, packages are the gift that keeps on giving, are free to get but not to have, you don't get to pick your package, or packages, I should say, or when, at all... and if you don't like your assigned package you are stuck with it.

Saturday, February 18, 2017

Confessions of person with chronic pain

migrainevisiblenow

  1. Confession- I used to think when I was younger the pain could take my body but it could never take my mind. I was very distraught when I realized I was wrong.
  2. Confession- There are days the pain makes me just not to want to be around people.
  3. Confession- I have ignored serious symptoms because I just wanted to see if they would go away or were Really important.
  4. Confession- The first time I thought of suicide I thought to myself 'who is mad: the one who thinks about ending the pain or the people who do not help you treat it and expect you to function through it?'
  5. Confession- Nothing stops the pain. I smile. I tell you it is a 7 or 8 or 6. There is no 0. 0 doesn't exist and hasn't for decades and decades and decades. I don't understand 0.
  6. Confession- I understand suicide. I understand the desire for an end to pain. It makes a lot of sense. It even makes rational sense. I get why not to. I get the concept of living for the sake of others. Or making up reasons to live. Or the value of living itself. But I do understand suicide. Like I understand euthanizing a pet in a great deal of pain. It scares people that I understand suicidal people with chronic pain, but really, many of us 'get it'.
  7. Confession- When people as my 'how I do this.' How I live with the pain. I actually have no answer. It could be 'because I must' but in the back of my mind I know I don't 'must'. I have no idea how I do it. I have no idea how I survived this long or why. It is a mystery where we get our strength and determination from. When we lose so much to this.
  8. Confession- I have ignored serious symptoms thinking 'well, if it kills me, it will be natural causes.'
  9. Confession- I have 'forgotten' to tell doctor symptoms because I don't want to seem like as a hypochondriac.
  10. Confession: I have missed work solely because of depression before.



Friday, February 17, 2017

Medical stigma and discrimination

_1 in 4 people, like me, have a Mental Health problem. Many more have a problem with that._.jpg
It is one of the worst feelings in the world when you face medical stigma.
One is mental illness stigma and leading to improper care.
I was surprised when, after one of these run-ins, my psychopharmacologist said this sort of behavior was all too common. At least 14 studies have shown that patients with a serious mental illness receive worse medical care than “normal” people. Last year the World Health Organization called the stigma and discrimination endured by people with mental health conditions “a hidden human rights emergency.” When doctors disciminate
I feel like I encountered this when I went to the ER to get these chest pains checked out. He looked at my history. Said I had anxiety. Didn't run any tests. And sent me on my way. I get I am depressed and am being treated for it. But I do not have anxiety and I think I would know if I did, considering when I have these chest pains I am rather calm. If I wasn't I would have called 911. I didn't. I waited until the next day. Just following up on the other doctor to make sure the chest inflammation wasn't getting worse since it was affecting my breathing. Considering I still have the chest pains and now these intermittent dizzy spells it clearly isn't going away.  First time I encounter such... disregard for someone's wellbeing from a doctor. Not to mention I once went in for depression and they completely ignored my pain after... all in your head. I'm like, no, I am depressed because I am not coping well with all this pain. Delayed that Fibromyalgia diagnosis. Once I began to cope better and depression dissipated I ended up seeing a different doctor who sent me to a specialist, a few years later.

Sunday, February 12, 2017

Gray matter abnormalities in FM

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There have been more than a few studies on gray matter abnormalities in Fibromyalgia. Hell, I distinctly remember the one that specified certain atrophying in the brain, that could be accounted for because we have chronic pain.  This particular study is a meta- analysis of those said studies to see what exactly we can say about gray matter abnormalities. (A meta-analysis of voxel-based morphometric studies. Semin Arthritis Rheum. 2016 Dec; 46(3):330-337). The time frame looked at is January 2000 to September 2015.
Seven studies, reporting nine comparisons and including a grand total of 180 fibromyalgia patients and 126 healthy controls, were included in the meta-analyses. In fibromyalgia patients compared with healthy controls, regional GM decreases were consistently found in the bilateral anterior cingulate / paracingulate cortex/medial prefrontal cortex, the bilateral posterior cingulate/paracingulate cortex, the left parahippocampal gyrus/fusiform cortex, and the right parahippocampal gyrus/hippocampus. Regional GM increases were consistently found in the left cerebellum. Meta-regression demonstrated that age was correlated with GM anomalies in fibromyalgia patients.Prohealth
In conclusion, they identified a characteristic pattern of gray matter abnormalities within the medial pain system, default mode network, and cerebro-cerebellar circuits which suggest that fibromyalgia is a complex syndrome involving areas of the brain beyond those solely for chronic pain. 


See also: Gray matter atrophy in fibromyalgia
Source
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Saturday, February 11, 2017

Understanding and being there

Chronic pain is real. It is like that booboo you had but forever. Get it_.png
People in general also get pain. What do they know about it?

  1. It is sucky: Yes, it is indeed unpleasant.
  2. I want it to end and know that it will: Yes, the pain is unpleasant but it will not last long. This is not quite our experience of pain. Pain can malfunction.
  3. Makes you have to rest and unable to work: yes, for acute temporary pain you have to take it easy. Indeed. Must be nice. When it is chronic sort of not our deal.
  4. The pain killers make me sleepy: What the actual hell? You get pain killers for That. Well, that just grinds my gears.
  5. Sometimes it still hurts when it rains: I will throat punch you.

That got aggressive fast. So... I envy temporary pain. No one wants chronic pain. I think we can all agree on that.


Friday, February 10, 2017

The sinkhole

in-darknessin-nightthoughtsplummetdowntheslipperyslope
I love my depression medication Abilify. Don't get me wrong, without it things would be a lot worse. And I know it because I lived it.

However, since my last letter from the insurance company I have been mentally unwell. Medication for depression doesn't poof the depression away. You still have symptoms there. Sort of like mild depression rather than major depression version. But I have been struggling lately. 

I do know it, though. In fact, when I read that letter and felt that mood plummet I contemplated calling my psychologist in that moment. Because of how I was thinking and how my thoughts were spiraling down that slippery slope. But I was very much aware of my thinking. Very much still logical about it. Not like I would have been if I hadn't been on medication. So I just wallowed in the emotion but maintained. It was a bad day.

It is the sinkhole of depression sucking you down. But at least you know it. And that is something, right? 

But it didn't get better. So now I think maybe I should have pushed up that psychologist appointment after all. I had been wallowing and missed an appointment and by doing so delayed making one. Finally did but it isn't until next month. My mistake. Because now my mood is significantly lower.
I have the lack of motivation. The fatigue. The wanting to hide in a hole until everything just goes away. 

But not fighting hasn't gotten me anywhere so I have to push that aside and get things done. So I will. One step at a time.

It is exhausting. The depression layered over the pain. It kills my desire to fight. Destroys my self-worth. 

Better though with medication. I'll keep saying that because it is true. Depression is like the ocean. It has depth. The deeper you go, the harder it is to surface. May cause suffocation. But you can tread water for some time and it is better than when you were drowning.

Monday, February 6, 2017

And all the ‘give a damns’ were all gone

Look! I found a jar a stuffed it full of all the 'give a damns' the government has for people with chronic pain..png
Chronic pain is actually a massive issue. I don’t think anyone can say otherwise. My body certainly agrees with this statement. The numbers concur.
It is also a complicated, poorly understood, problem. I have seen a lot of recent research and it is fascinating but, clearly, a long way to go. But getting somewhere for sure.

So then comes the opiate epidemic. And the government gives a damn alright. About addiction. I could get right into how a lot of people addicted don’t even come from prescription drugs or that people in chronic pain account for a wee teeny fraction of people addicted to opiates… but I will say more along the lines of this: there was some give a damns out to give and none were given to people with chronic pain. That those to suffer the consequences of the opiate epidemic were the ones suffering quite enough already.
But mostly I just wanted to say:
  1. We can all agree there is a problem with things like Fentanyl. Drugs like that are killing people. Fact. Something needs to be done. Fact.
  2. We can all agree chronic pain patients deserve their pain to be treated. That untreated pain can lead to suicide. Leads to being unable to function, which leads to being unable to work. Fact.
  3. What seems to be missed is that by solving 1 they are screwing with 2. They change the guidelines on opiates and make doctors fearful to prescribe them. Decrease or eliminate patients prescriptions. AND have Nothing to replace it with.
  4. We call all agree it makes no sense to take away pain treatment and not have a replacement treatment. To not have a serious plan on how to have specific pain management that is effective for every single patient affected by such changes. Every. Single. One.
So, yeah, I say they didn’t have any give a damns about us chronic pain patients at all when they willy nilly mess around and intimidated doctors and changed restrictions. Because without comprehensive, affordable and effective pain managements strategies in place to replace their existing ones they have screwed many patients.

And I am not even counting the ones in severe, massive, amounts of pain that literally need opiates to survive. Those ones should not be messed with. Their treatment helps them survive a hell people cannot comprehend.

So we have this extremely complicated pain problem in millions of people that deserve proper pain management. Who is going to give it to them now? Who gives a damn? Because their doctor won’t provide them opiates but does he have the comprehensive knowledge to provide anything else? Are pain clinics going to give 150% to each patient to try and achieve a strategy for each one to manage their pain sufficiently so they can work, so they can exist, so they can just manage their day to day lives? So they can have some semblance of a quality of life?

Or… is it enough that they are not addicts?

This is coming from someone who does just suffer mind you. I have chronic migraines so no opiates for me. So I deal with the chronic migraines, EDS and fibromyalgia pain. Much like I deal with the resulting depression. Much like I have personal knowledge pain alone is a suicide risk factor. No, I just have friends in the pain community that I don’t want to have to suffer more than me. I take what I suffer and I magnify it because I know they have conditions worse than my own… and I know, I wouldn’t want to exist like that. I hear of the suicides already. I hear of the despair. The loss of hope. I have to say, I would have done it differently were I in charge. I would have given a damn about the ones who are suffering and need pain management. And I certainly wouldn’t have ignored them. They should have had their voices heard.

And if you think I am talking about the States, I am not. Their madness spread to Canada. Now we all suffer the consequences.
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