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 type
I'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:

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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.”
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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 from day to day. It tracks nausea/vomiting, pain, and impact on day. I also wanted to track my diarrhea so I added that to the tracker. It seems via the tracker me my pain is a low constant, the nausea is like a wave from middle to high, and the diarrhea flares, when the diarrhea and nausea are both flaring it greatly affects my day.


Stool tracker: is another one to help with gut issues to keep track of bowel movements. And you can leave notes here specifically what you think the trigger was. Or treatment you have in mind.

Food Tracker: This is great for digestive issues. I can have a bowl of cereal, as I did a few days ago, and go that was a massive mistake and input that in the food tracker. You can take a picture of the food, describe it and the reaction you had to it.

Medication tracker: I have inputted all the medications I take in here so I know what they are and any changes might have an effect on me digestive wise.  So the medications you have in there, it will track you taking them. This in particular, is great for ones that are occasional like for IBS or nausea... you can see how often and what days you are using them.

Daily moods: I track my daily moods. A feature I like because it is important with chronic illness to monitor your moods. I have depression, so twice as important to me.

My journal: I use this to basically point out anything that I feel may have trigger an IBS flare or aggravating my nausea. Anything I am trying to help with the nausea. As well as treatments I used to help either. Like gravol, zofran, peppermint tea. I also use the three things I am grateful for, as a gratitude journal. It is important for us to keep in mind what we are grateful for or thankful for. The journal is great for free flow thoughts, for gather thoughts together or making conclusions you have gathered about your health. Or to even set health goals based on the evidence you are collecting. Like for example, my reaction to milk lately suggests I may aim for lactose free milk and see if I can eat cereal without the horrible consequences.

I use the routine builder for my exercise routines and the daily vitals to track weight, pulse and blood pressure. I am losing weight from the nausea. So far it seems I am 'maintaining' after a 40 pound loss, but it is a good idea to track it to ensure that I am still not losing.

Overall, Gut Health Storylines App is a well-rounded and excellent tool for keeping track of bowel and digestive disorders. Tracking medications, our food, symptoms, and stool. It can help us find a pattern with the symptoms. Help us see the impact of the symptoms. See how much medication we are using to manage the symptoms. I found it easy to use, beneficial to me and I will continue to use it to help manage my IBS-D and persistent nausea.

Reflection: knowing the game

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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. 

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

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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.

Confessions of person with chronic pain

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  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 ask me '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.



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.

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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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.


The sinkhole

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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.

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.

The chest pain dilemma

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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 heart doing something funny. I waited it out. Likely should have called 911, but I was depressed at the time and ambivalent to my wellbeing. After the pain passed, my heart fluttered rapidly and a rush of blood flow ran through my body and I got one hell of a headache. I am not sure I can even adequately describe the experience. But looking back, it seemed like a heart attack. Maybe it was.

So I compare all chest pains to that. Even the angina I had to the triptan Imitrex... not nearly as bad. So I had not gone in for that right away, either.

This however, I did go in for. I went in and the ER doctor said to me it was anxiety. He said this without doing any tests. At all. Without listening to me. At all. Gave me a script for ativan. Which I threw out, because I actually don't have anxiety. I have not gone back since then.

Yet, periodically it keeps coming back. It is concerning because it is chest pains, yes, but it is shortness of breath and dizziness. So I have the chest pains, which I don't really consider to be that severe, so I don't do anything about them. Then waves of dizziness assail me with shortness of breath. If I get up and move about, when I rest again, I have palpitations for a bit, then back to the shortness of breath and dizziness. Generally, my heart flutters during that.

Seems to only really happen when I lie down. So I can't go to sleep. The chest pains wake me up. The dizziness jerks me awake. I end up getting up, concerned. It improves when I am upright, just some mild chest pains then. Sometimes it happens upright. Just these dizzy spells with a fluttering heart.
I don't think it is a heart attack. Although, it is hard to say with some of the symptoms being so ambiguous in women. I mean sometimes my stomach will hurt as well. To the point I though heartburn?

So it happened last night. I tried sleeping for as long as I could. This repetitive dizziness assaulted me. And as I started to fall asleep jerked awake feeling like I wasn't breathing and my head spinning. Jerked awake a second time with a sharp stabbing pain in the chest. Had the pain stayed that high, I might have gone to the ER.

I am paranoid of going to the ER for it now. I don't want to go unless it IS something. Nothing like some douche discriminatory doctor making me feel like I have to be SURE it is an arrhythmia or heart attack before I seek help. Such that I am waiting to see HOW BAD it gets. By my measuring stick, it has to be quite bad for me to consider it a heart attack. I want it to get that bad, at this point, so I can figure out what the hell it is.

All is not lost though. I go to my doctor on Monday. I had mentioned this a while back. We briefly talked about a take home heart monitor. We might have to have that discussion again. Just t

Thursday Negative thought day

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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?
  1. Pain has an indefinite length. Not forever. We do not know how long it will last for.
  2. 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.
  3. 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 Forever. We know that isn't true.
  4. We could learn all sorts of new ways to cope with pain, all sort of alternative treatments, exercise, meditation... that help us reduce our suffering. We do have the potential of reducing our suffering. Some flexibility is there.  Even if the pain is there for the rest of our lives... it might be managed better to achieve a better quality of life.
This is what I try to remind myself when I have this thought spiral.

Can you see?

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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 wee little minuscule details. Insurance companies focus on a) get you back to work, b) get you off the books and they do so with so-called evidence they demand which is interpreted by a nurse. I've had with me, once again got a letter of insufficient evidence after my doc sent in 125 bucks worth of paperwork. It was a thick stack. From an application that is usually 3 pages. What do they need? I have no clue. I asked and they said just more than what they got. Bravo on clarifying that for me. Just more mysterious evidence. I should just send her entire file, my

Insurance companies focus on a) get you back to work, b) get you off the books and they do so with so-called evidence they demand which is interpreted by a nurse. I've had with me, once again got a letter of insufficient evidence after my doc sent in 125 bucks worth of paperwork. It was a thick stack. From an application that is usually 3 pages. What do they need? I have no clue. I asked and they said just more than what they got. Bravo on clarifying that for me. Just more mysterious evidence. I should just send her entire file, my neuros file, my pain clinic file, and my psychologists redacted file. Anyway, I am sure they just want to screw me because I am chronically ill. It is just discrimination. They don't want me On the books, so they will prevent it from happening.

Doctors can be concerned about a lot when you have a good one, which I do. So she is concerned about impact, suffering and the price of pain. But some only focus on symptom treatment. Some know so little about pain, they can no properly treat it or talk about it. Some are so bias about it, you'll never get good treatment for it. They never ask the right questions if they are indifferent. How is the pain impacting your life, your career, your emotional state of mind.? How is the pain itself limiting you, your career and causing problems.?

Employers want a reliable and dependable employee. The bad ones will Make you one even if you are too ill to be one. They will bring in the ultimatums. They will threaten you with demotion... or with being laid off due to 'the economy'. They will guilt you. Tell you, you are failing yourself and your co-workers. May very well lie and say your co-workers are complaining about you.  Good ones will motivate you, accommodate you, and help with restricted hours if you need them temporarily. Good ones will empower you to succeed with disability. Bad ones will crush you and destroy your self-worth.

Because we are not seen by people with other agendas, bias, discrimination, and stigma. We are lazy. We just want a day of. We are drug seekers. We are faking how much pain we are in. We are a liability, not an asset and one not valuable, therefore one to be rid of. We are weak. We have brought it on ourselves.

We are not seen. We are invisible. Our pain is ignored or punished. Or judged. Mocked. We? We are not seen at all. Our battle is never understood. And we suffer under the stigma, judgement, and bias which can lead to depression, anxiety, low self-worth, and hopelessness.

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...