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Showing posts from February, 2017

Rare disease day: visual weirdness #CareAboutRARE

Rare Disease Day
My Rare diseases are:
Persistent migraine aura without infarction (also known as "Visual Snow")
Ehlers-Danlos syndrome hypermobility typeI'm going to write about persistent migraine auras and visual snow. Because when I read what was listed on the site of rare diseases, as you see highlighted above, I was surprised. Persistent migraine auras are not visual snow, and visual snow is not a persistent migraine aura. I have both and I know in the recent past Visual Snow was considered to be a Type of persistent migraine aura, but certainly not the Only persistent migraine aura. 

Here are some previous posts I have written on the subject:


Persistent Aura Without Infarction (PAWOI)


Review: Gut Health Storylines App

“This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in now way influenced by the company.”


The Gut Health Storylines App is, of course, to help you monitor and maintain your gut health. I have IBS-D and I also have persistent nausea of an unknown cause, potentially migraines.  It is important to try and figure out what is flaring the IBS-D. And if I can try and figure out the cause of the nausea, or anything that may be impacting it. So far the tracking has helped me determine my menstrual cycle makes the nausea significantly worse, but other than that not much else. IBS on the other hand, it was obvious in some cases what caused a flare... milk was the culprit one day and a magnesium supplement on another. I tracked these remarks in the journal.

The symptom checker is important to me to track how these are affecting my daily life. As well as monitoring the nausea and how bad it is …

Reflection: knowing the game

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 not…

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

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…

Confessions of person with chronic pain

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.Confession- There are days the pain makes me just not to want to be around people.Confession- I have ignored serious symptoms because I just wanted to see if they would go away or were Really important.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?'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.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 th…

Medical stigma and discrimination

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 disciminateI 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 n…

Gray matter abnormalities in FM

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 parah…

Understanding and being there

People in general also get pain. What do they know about it?

It is sucky: Yes, it is indeed unpleasant.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.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.The pain killers make me sleepy: What the actual hell? You get pain killers for That. Well, that just grinds my gears.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.


The sinkhole

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 b…

And all the ‘give a damns’ were all gone

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:
We can all agree there is a problem with things like Fentanyl. Drugs like that are killing people. Fact. Something needs to …

The chest pain dilemma

I am getting chest pains again that concern me. They don't always concern me. Because with Fibromyalgia Costochondritis is common. Not to mention, I get chest pains sometimes from a triptan side effect, along with heart irregularities. So it doesn't always alarm me.

 I tend to measure it based on the worst chest pains I ever had. This incident I had when I was younger and before I was diagnosed with hypothyroidism. My heart beat had been going extremely erratic. I mean, so extreme I was afraid to move for fear it would just crap out on me. Then on
I tend to measure it based on the worst chest pains I ever had. This incident I had when I was younger and before I was diagnosed with hypothyroidism. My heart beat had been going extremely erratic. I mean, so extreme I was afraid to move for fear it would just crap out on me. Then on day, the worst chest pains ever on the left side, to the sternum, up my shoulder and my back. Crushing my chest. I had to lay back. I could feel my he…

Thursday Negative thought day

The pain with never end. It is going to go on forever. What is the point of anything if I am going to suffer forever and can't change anything? It is relentless and endless.

I am guilty of this thought spiral when I am in a lot of pain and depressed.
So what do we do to make that more rational a thought? More reasonable?
Pain has an indefinite length. Not forever. We do not know how long it will last for. Pain treatments. We do not know what sort of pain treatments are on the horizon that could seriously help with our pain. Just an example for chronic migraines is the CGRP treatment that may very well help immensely within the next five years. We never know when something like that will come out and greatly reduce out pain.Pain is variable. It is not your worst pain ever that is going to last endlessly. You are going to have good days. Baseline days. Medium days. And, yes, bad days. But you can't interpret it as this immense Pain, of horrible intensity, lasting For…

Can you see?

This poem Can you see? was written in a time when I had an indifferent doctor and an employer who say me as, essentially, a problem to be solved. I was in a great deal of untreated pain, had depression and was suicidal. And I wanted to know could they see it. Any of it. Could they comprehend the pain? See the toll it was taking on me in the least fraction of a bit? As I played by their rules, danced to their tune and faked smiles to appease them. Did they notice at all I came closer to dying ever second of the day?

The answer, of course, is no. They didn't see me. The doctor saw a difficult patient to treat that he had little time for. The employer saw a problem she wanted to fix or be rid of. Neither cared about the impact of their choices and decisions on me. And I nearly died for that.

Because no one, even medical professional, or insurance companies or employers care about Impact, Suffering and the Price of Pain. None of those things matter to them at all. They focus on the w…