Tuesday, January 27, 2015

Invisible Awareness Magazine

Invisible Awareness Volume 1 

 I have begun this monthly online magazine Invisible Awareness that can be ordered for 3.99 an issue. This first issue is all about fibromyalgia.

You can order it for 20% off until Feb 5, 2015 with the code ABRX9WR5V32Q


I am looking for people to submit to the magazine on chronic illness topics. I am looking for:

Personal stories and essays

Since this is a start up I currently cannot pay per piece, but let's hope that in the future I will be able to offer something per submission.

Please send your submission to: nikki3albert@gmail.com with Invisible Awareness Submission in the header.

Sunday, January 25, 2015

"We are too #able to be #disabled or too disabled to #matter."

I made this image for the Migraine Misfits group I admin and no truer words have ever been said.
"We are too able to be disabled or too disabled to matter."

It is hard to even find this line with society to be honest. I can never find it, but I feel it. I have gone back and forth on it. As can happen with invisible disabilities. Most of the time I find we are left struggling on the 'too able to be disabled'. Left to flounder in a society to fast paced for us, desperate for some sort of relief or just for the pain to stop for One moment... but just too able to be disabled, right? Because we present this 'functional' image. This 'can't see it' so it must not be that bad.

Functional. Or just functional... enough. And so society does not give a damn that you suffer for it. It is a problem. I like to think most of us are offered the right programs to cope with our chronic illnesses but I was diagnosed with my first at 16 and just got into a chronic pain clinic at 37. So I know people slip through massive cracks in the system. I know a lot of us just try things on our own. Acupuncture? Sure, I'll give it a go. Chiropractor? Tried that. And the list goes on and on and on. With utterly no guidance at all. In my case no real medication either on the FM side until six years back. So it is a broken system.

I had a doctor that when I was on a short term leave from work, which happened too often (yeah, not so functional after all) his sole purpose was to get me back to work. Because he must have believed himself I was too able to be disabled.

Then something happens and you cross the line and are 'too disabled to matter'. You are of no use to society anymore and they have no use for you. You could starve for all they care, and you might given the income they provide on disability. That, frankly, is a disgrace. Here, in Canada, and in the States. People should not have to live like that just because they are disabled. But you also find you are ignored, discounted, considered worthless and your opinion not taken into account. Half the time they think you are lazy, a drug seeker and faker any way.

Then someone decides, no, you are more functional than that. So now you are back to being too able to be disabled.

People never look at the stigma inherent in the system. How little companies accommodate disabled employees unless Made to, and then resent that fact. Or don't do it at all. And if you do not function as you are told in the workplace they come down hard with the ultimatums. Get Better damn you!

The stigma of those on disability is just right in the system. Keep them just above the poverty line? What is that about? These are people that had no choice about there illness. Had great jobs and careers and you knock them down and say sorry try living in poverty.... because we don't Value you. You don't Matter.

Saturday, January 24, 2015

My new #freelancer website

So here is my new Freelance writing site The Hermit. I had to make a new one because the old one was not working for me so for a bit I was just using my writing blog. But when I was on long term leave I could not make any income so mostly I was doing low pay or for free work. Time to up my game as it were.

Not to say that I will not occasionally add other work to my portfolio that is for free if it adds something to it. I was thinking of doing just that. Shows experience and adds a little something for people to look at on the site.

So hopefully this will add a little something for people to review when I am looking for paying work. I have a few things in print on my portfolio so that is something at least. And my regular online gig as well.

This is my plan since being tossed by the insurance company. To pick up more freelance writing. Article writing and blogging. That sort of thing. Then something for a baseline income to cover the rest. It is the best idea I have at the current time based on my skillset. Research and writing skills. Plus because my pure enjoyment of it. That would be an added bonus really. Ideally I would find something in the FM and migraine community, but that would be the icing on the cake for me. My perfect scenario.

#glorious #moments we can #win from the #Pain

Okay, embracing life is a complicated thing when compromised by a boatload of pain. However, it is very true that time will pass and with it our lives. We have to figure out ways to increase our quality of life such that we can will these glorious moments from the pain. Or just win moments. I like moments.

I can't myself recall too many glorious moments I have won. Mostly I think of vacations that I went on despite the pain. As we all know chronic illness and chronic pain make vacations difficult. It is not just the planning involved in just going it is the very fact you are taking your illness With you. So you have to pace yourself. You cannot do all the things you Want to, just a little bit each day with a lot of rest in there. And there will be pain. Nevertheless you get time with family, you get a change of scenery and you get joy. You get glorious moments.

I vividly recall the trip I took to Scotland with my family when I was 18 for example. That was a glorious collection of moments I will always remember. My great-great-grandmother was turning 100.

We returned to Scotland several years ago and it was also a glorious collection of moments I got to spend with my spouse. My cousin was getting married.

Then there are the trips that are short into the mountains. Like the one my spouse and I took into the mountains to a cabin (I cannot handle a tent, too painful). I find it very peaceful in the mountains. And though we took in the scenery, mostly by driving, and short little walks... I really enjoyed myself. I had some wicked migraines but that is Life. I treated them aggressively as I could and did what I could to enjoy the peace the enviroment brought with it.

And I would have missed those had I been afraid to travel with the pain. Knowing traveling tends to increase the FM pain and the migraines as well usually. Knowing that, you feel like why would you even want to go? What would be the gain? There is a lot of gain, just of a different sort.

It is that way with the little moments in life. We know there will be more pain to earn those moments but we gain mood improvements, mental improvements, memories, life, glorious moments.

We have to remember however for every moment we want to earn:

  • Pacing: we always have to pace ourselves. Even on those low pain days. Especially those low pain days when we feel like we can do more, but then push too hard and it leads to much more pain. That cycle is what pacing is designed to avoid. No push, and crash, cycling. 
  • Taking rests when it is needed. Even with people it is important to know when you need a break and take it. Tell people that you need one and suggest going for a coffee or lunch or to have a sit down for a bit.
  • Leave when you have had enough. If you have reached your limit no matter where you are understand it is fine to leave early. You do not have to stay. You are under no obligation to push your limits.
  • Remember for things like FM especially that changing positions is important. Do not sit for too long. Do not stand for too long. If you go to an event that requires a lot of sitting time, go for a walk or get an aisle seat and stand beside it for a bit. For any event that requires a lot of standing or walking, ensure you are positioned by somewhere where you have the capacity to take a break when needed.

It can be difficult with pain and fatigue to have the motivation and energy to want to do anything. And I do not mean that we should jump in and go run amok. Just try to fit some moments in there. Fit some life in amongst the pain.

Thursday, January 22, 2015

#socializing and my #insurance company

There is One thing I have done on the recommendation of my psychologist that the insurance company I deal with has latched onto to suggest I have 'significantly improved' which suggests they are incompetent douchbags. However, that one thing is still a good thing, just a minor thing. It is leaving the house to socialize one every two to three weeks to play cards with friends. This 'socializing' aspect that improves mental and emotional wellbeing.

Isolation all day for weeks on end only leaving the house for doctor appointments, neuro appointments, phsyio and the pain clinic is not good at all. You get no real interaction with other people. Day in and day out you are all alone in the house all day. And less and less do you even want to leave the house.

leaving the house means going out into a bright, loud enviroment that will just amp up the pain dramatically. And it is not fun. It can make a person miserable pretty fast. And driving constantly gives me vertigo which also makes me pretty miserable all the damn time.

So it takes some effort to consciously choose to go out and interact in the world. Choosing at least an enviroment that will be Less painful for one.

But there were times I could not stay long because it just became too painful. There were times the noise and lights were too intense for me too handle. My friends have kids and kids just are not quiet creatures by habit. So I have a migraine when I go. I have to take more medication just to go at all. And more to just stay. And even that is not always sufficient.

Yet.... it does make me happy. I enjoy being there. I laugh. I have fun. I enjoy there company. I leave feeling mentally and emotionally better than when I got there, despite the pain. I know it is good to do things and have a life, despite the pain. As long as you pace yourself. I understand that.

So it was a small step. And a good one. But a 'significant improvement'? Hardly. That would be if I was able to drive and run errands. And leave the house on my own. And socialize once or twice a week. And have a life. And drive myself to appointments. And... how about this... Have Less Migraines. So they are morons. But the point is, getting out of the house and socializing is good for our mental and emotional wellbeing. It can be really simple things. Like going out for coffee or lunch. I was told it could even be going out by yourself to a coffee shop and just being around people. Things like that.

I don't particularly like insurance companies. We as the chronically ill want to improve and will do things to help improve our wellbeing and health. Many things. Many will not have an impact on the pain just helping us deal with it a little. But they don't care if we can deal with it better, if it gets better, if it could get better... they don't have the time to wait. They just want an excuse they can use to get you off their list. It is pretty pathetic. All they had to do was wait for me to finish my treatment with the pain clinic, but apparently they think they know better. And clearly they do not. No idea who they hire at these places but brains must not be a prerequisite. Just ruthlessness I expect.

Patients with #fibromyalgia had worse #cognitive function than those with rheumatoid arthritis

According to a presentation at the American College of Rheumatology Annual Meeting people with fibromyalgia had a median rating for cognitive function that is significantly lower than in patients with rheumatoid arthritis and reported more symptoms of impaired concentration.

According to the researchers, the largest difference between the two groups was in distraction by background noise, poor reading comprehension, difficulty following directions, trouble following conversations and difficulty concentrating.

FM patients also reported significantly more difficulty than the RA group in areas of inability to retain patterns when adding, subtracting, multiplying or dividing; inability to recall known words; frustration when speaking difficulty expressing thoughts verbally and other problems with cognition. (Helio)

Katz R, et al. Paper #1112. Presented at: American College of Rheumatology Annual Meeting. Nov. 14-19, 2014; Boston.

Ehlers-Danlos syndrome video

Thorough video on Ehlers-Danlos syndrome.

Wednesday, January 21, 2015

#Insurance company tossed me off a cliff. #uncalled for.

Living with chronic illness means dealing with a lot of uncertainty. We have to deal with the changes in our health that impact all aspects of our lives and this can be quite difficult to deal with. Especially when we have goals and dreams to attain in the process.

I have been on long term disability from work for the last two years. I cannot go back to my previous employment, that is pretty much a sure thing. I can work from home or have some sort of part time work. And that is something I have to now consider. As in now. As in right this minute. As my insurance company has cut the strings and decided I have improved enough that I can attain some sort of work somewhere.

Which gives me a lot of anxiety, as it would any sane person. Financial stability and disability are not friends. We are constantly trying to find ways to hold onto our budgets because it is difficult to be disabled and financially stable. That I determined when I went on leave and my income dropped. Now I have to replace that amount in three months and it will be, at the very least, a challenge. I do freelance writing and blogging and have done both for some time now, but finding the clientele to make that income will be quite the challenge indeed. I did immediately send a proposal to a FM magazine and group I wished to work with. I after all work a lot with this topic, live with this syndrome, and would love to raise awareness. But I likely will have to find some other at home work to supplement my income for some time in addition to freelance work.

Or I can appeal their decision. Which is even more stressful and tiresome and will just make me depressed and angry. But entirely possible.

We certainly have the option in these cases. Insurance companies are designed not to pay. We have to essentially force them to do so. We have the right to since we were the ones earning the income and paying for it in the first place.

I love the idea of living on my writing alone. I thrive on it. As you guys all well know given the amount of blogging I do. It fills a void in me. If we can find something that fills a void in us, that we have a passion for we should peruse it. Our mental wellbeing is a significant factor. We should have goals and dreams. No one said we cannot attain them. We simply have to go about things at a different pace with different methods.

I am, however, stressed. I would rather not like a time limit of 'no income at all' hanging over my head. I would rather have more control over it than that. As in, the pain clinics plan to have me attain this precise goal in the near future once I have progressed in treatment. And my psychologist agrees that working from home is literally the ideal conditions for me. So this was in fact the target. The stress of forcing myself to attain a certain income within a few months time, or struggle severely with financial stability, is not welcome.

Life. Unpredictable. Insurance companies? Predictable in there efforts to cut you off for any random made up reason they can find. Sigh.

I am thankful that I have progressed sufficiently in my pain management that my mood regulation is such that this turn of events has not crashed me into severe pain and mood swings. Nope. I am worried. Stressed. Yet, planning and thinking of ways to move forward with my options. I am pleased about that. Chronic pain can be significantly difficult to deal with in stressful conditions. The first time I dealt with this sort of insurance issue initially my mood plummeted like a rock. Just dropped. Not good while in pain. This time? I meditated.

Calmed myself down a bit and immediately went into 'How am I going to plan for the future?' What are my options? What needs to be done? What choices do I have? What do I want to do? What do I feel like I can handle? Balance it all out and consider everything and then move into a plan of action. I may not like the stress of a financial doomsday deadline but nor am I depressed and unable to think about anything. Two years ago... I was in survival mode barely able to function holding down my job and emotional stability with that sort of pain is difficult to manage. Not working, able to control my enviroment and sleep, learning new coping methods and pain management have given me the ability to lower my suffering, if not the pain. I believe that the exercise and pain clinic will do more of that... had they been given a chance. Insurance companies impatience to see a 'customer' back to work does not do them credit. These things take time. It is not like 'poof' the pain is gone! It is like a year later you are able to handle the pain better through various techniques.

I feel like this anxiety is common with us. We never know if we are going to get on disability. Then we never know when it will end... suddenly and we will have to deal with that. Then we have to deal with having a significantly lower income which is stressful. And an uncertain future. These are things I believe when someone looks at us they do not see. They see 'lazy'. Like we want to struggle financially.