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Showing posts from February, 2016

Review: of #MedNexus heath search site

Today we are looking at MedNexus for patients. It is essentially the search engine for your health. The idea is to narrow your search right away. The problem with Google in this area is the you have to weed out all the cure sites, scam sites and sites with little to no informational value to find what you were actually looking for.

And knowledge is power for the patient. Often we are forced to be informed about our disease or condition. We need to know what sort of treatment options there are and what our doctors are recommending... if that is the way we want to go. We need to be aware of what is currently going on in research and medications. Often we end up knowing more than our doctors and this is inevitable. We have the disease... they have to know hundreds. So we know all the details, the research and the nuances of it all.

So this is geared to the patient to enable the patient to be able to find what they need faster.
What I like about this search site is that it is bringing …

The #work #limit

There is a fundamental contradiction when you are not working. This idea that you Can indeed work. You get this notion because you are not in fact working so you are managing the pain better and sleeping better. Things seem... better. Not awesome, but slightly better. Just enough that you yearn to be productive.

I have plenty to keep me occupied with my blog, my Facebook page, helping out with the Misfits page on migraines and my fiction writing. I am productive.

I even have gotten over this notion that my self-worth is tied to what I do. Sort of worked that out in my head. Especially since a lot of people in this area have been struggling to just work due to the decline in oil prices, and that is what the local economy is dependent on. So people are losing their jobs and taking anything as a substitute. A person said that jobs change, financial situations change, but you just get through it and when you are not doing well you make the best of it. I think then so many people are not …

Too abled to be disabled?

This quote has stuck with me for some time because I am 'too abled to be disabled.'

All my life it has been. Hypermobility syndrome... exercise. FM, you can still be fine to work and for many years considered two young to even treat. Chronic migraines? You can't work full time, but surely you can still work. It was always about how to get me to work. How to get me back to work quickly. How to keep me working. And only recently at the pain clinic and acknowledgement that I simply cannot work full-time... took someone over a decade to realize this. After a decade of me struggling to push through the pain to work and failing too many times, enraging my employer, all the threats and ultimatums. Going on short term leaves, and my doctor asking when I was ready to come back... pushing and pushing. Going on a long term leave... insurance company pushing to get me back full time. And you realize, other than family and friends, no one in society accepts the limitations of chronic …

#Migraine #supplement #offer from Nature's Nectar

 Today I found a Migraine Supplement deal after talking with the owner of Nature's Nectar!I know a company online with a migraine supplement they sell through Amazon that is willing to do a campaign with me. It is Nature's Nectar'sMigraine Relief Supplement. He is willing to give it out for$1 dollar to try out the supplement yourself if you email him (support@naturesnectarlimited.com) for the special code. *There are a few supplements that have been looked at and are recommended for migraines. Products that have them all in one just makes it that much more convenient for us, since they we don't have to go out buying a whole bunch of bottles. I have seen some that say oh we will 'cure' you and I have been asked to try those out and review them, but 'cure' grates on my nerves. Other companies are flaky, you wonder what they even have in there with the terms they use to describe their product. I want something straight forward that I know exactly what is …

Best laid #plans...

A fiend calls you up to go to a concert, or to a dinner party or to go drinking? A family member invites you out of a family social gathering?

Do you go? Do you bail out on it because you fear you will be struck down with a migraine anyway? Do you hope you won't be and on the day of decide one way or the other whether you can go or not? Do I go out for drinks with fellow staff members after work? Do I do that 'volunteer' work at work for charity/festive events?

Should I? Shouldn't I? The question we face for any number of things every single day.


If we refuse: if we constantly refuse it is not good for us to be honest. It increases that sense of isolation. And socialization (Yes, even in introverts) helps with our moods. If we keep refusing, well, eventually people stop asking. And that is how you become a hermit like me. So for the friends you love you might want to find ways that work for you to hold onto them.

I will also feel guilty that I did, but not if it was a …

Recent Acupuncture study on FM

I have seen another acupuncture study that says it helps improve FM.

At 10 weeks, six months and 12 months after treatment, patients were asked about perceived levels of pain and depression and their physical and mental quality of life.
One year after treatment, acupuncture patients had an average 20 percent drop in their pain score, compared with a little more than 6 percent among those who had simulated therapy, the researchers found.
Scores on the Fibromyalgia Impact Questionnaire, which measures how the condition affects patients' lives, also differed between groups. Reductions were seen of 35 percent at 10 weeks, and just over 22 percent at one year, for those given real acupuncture, compared with 24.5 percent and 5 percent, respectively, for those given sham acupuncture, the researchers said.
In addition, pressure pain and the number of tender points also improved more in patients given real acupuncture after 10 weeks, as did measures of fatigue, anxiety and depres…

Topical #capsaicin cream for #fibromyalgia

When it comes to the treatment of pain with fibromyalgia most people have at one time or another tried various topical creams. Some people may find relief with arthritis creams while others do not, however, research on capsaicin based topical based creams shows promise. Capsaicin is what gives chilli peppers their tongue scorching heat but has analgesic properties. Capsaicin based creams can be purchased without a prescription or with and are used for conditions such as back pain, muscle pain, arthritis, rheumatoid arthritis and nerve pain.
What is fascinating about how capsaicin works in particular for fibromyalgia is that it is believed it lowers substance P in nerve endings at the location it is applied to. Substance P is quite important when it comes to fibromyalgiabecause it is involved with transmitting the pain impulses from the brain and the levels of substance P in fibromyalgia patients is significantly higher than normal. The idea that this topical agent can temporarily dam…

The attitude to make or break

Our relation to pain and how we think about the pain experience, adds its own flavor to that pain experience. "your attitude towards them that will make or break the rest of your days."

I have wonder about this because I suffer a lot. There have been times in my life where the pain was the same, but the suffering was lower. As in I was handling that pain better than I was later on, or at other times.... because the suffering became a problem. The depression also became a problem, which magnifies the suffering.

However I met this woman in my pain 101 class at the pain clinic who had CRPS which causes significant constant pain and she was coping exceptionally well. Well, we all had days where coping was difficult. The pain caused insomnia and such. But her attitude about her pain and her life was awesome. I remember thinking if she can do it, so can I. But I can't because my attitude about pain is all doom and gloom.

I have another example. Lately things have been an issu…

#Hypersensitivity to non-painful events and #Fibromaylgia

Fibromyalgia is a chronic syndrome defined by widespread muscle pain, fatigue, sleep dysfunction and cognitive dysfunction. Fibromyalgia pain dysfunction involves an increased sensitivity to pain known as hyperalgesia. A recent study published in Arthritis & Rheumatology, a journal of the American College of Rheumatology (ACR) shows that people with fibromyalgia have hypersensitivity even if events are non-painful based on Functional magnetic resonance imaging (fMRI) imaging of the brain. The brain imaging reveals reduced activation in primary sensory regions and increased activation in sensory integration regions. These responses to non-painful stimulus may be the cause of problems with tactile, visual and auditory stimulation. Patients often do report reduced tolerance to environmental and sensory stimulus in addition to the pain.

The small study included 35 women with fibromyalgia and 25 controls. Patients had an average disease duration of seven years and a mean …

The problem with being sick is sick a problem

You`re sick.

But that is not the problem.

The problem is that you had the audacity to be Chronically Ill. And that simply is not socially acceptable.

People want to know when you will get 'better'.

They wonder why you 'don't look ill'

They want to know when you will be ready to work.

They want to know how it makes 'sense' you can do things one day, and not another.

They don't want to work with you. Certainly don't want to accommodate you. Being forced to leaves a bad taste in their mouths. Why should they have to conform when clearly you can't 'handle it'?

And why do you decline all those invitations? Or never get any plans done when you say?

Why don't you conform to what a sick person should. Do everything you can to get better and you will, don't you know that?


I wonder if they are uncomfortable because I represent weakness? Weakness they could have someday? Am I the frailty that looms ahead of them? Does it frighten them to s…

What I like to stress about #ChronicIllness

IMPACT

For me that is what I most consider when I think about my invisible illnesses. For example I have asthma and hypothyroidism which are both invisible illnesses but for me they are very well managed. I discuss them for time to time and they do have some impact when you look at the whole health picture but overall I cope with them very well because they are managed. On the other hand, I have chronic pain conditions of fibromyalgia, chronic migraines and peripheral neuropathy and add those together and the impact on my life is significant.

Some of our invisible illnesses can have a significant impact on our lives. And, by the way, no rule that specifies we can just have one health condition. Rather think that is uncalled for though. One should be the rule and then you are good for life. Should be in the rule book.



The impact on our lives can be seen in all facets of our life. Our divorce rate is over 75% and we know the extra struggles and issues we have to overcome t…

Embrace the turtle.

It seems difficult for me this concept of 'having a life' and having chronic pain. I can comprehend we have to make compromises and may not be able to have the career we wanted. A decision that is complicated, comes at a cost but can be beneficial to our health when we were exceeding our limits.

I mean it is difficult to be not a hermit. To have the desire or energy to do anything at all. The motivation to even want to do anything at all. The pain itself, well, here is how it goes...

I want to paint the walls in the bathroom.
It needs to be done.
I want it to look better
I am very aware it will be painful while I am doing it.
It will trigger a migraine while doing it.
I am extremely aware the heightened pain will last for days afterwards.
So when can I do this so that I can suffer the consequences with no interference?
Then I do it.
And I suffer the consequences of it.

But here is the thing. Sometimes I weigh those scales of want vs consequences and I just don't want to …

Thoughts on Journals.

We didn't ask to live in the land of pain. That is what we got. These thoughts are the thoughts of my pain. Pain gives me some seriously negative thoughts. I think about the fact I am in a lot of pain today. For the most part, very low functioning as well.

We really do have to confront this overloading negativity because it has an in. It has the pain to console its thoughts out.

We have to be the ones fighting for the other side. But we need to work through it. Get the bad thoughts out. Get some good things in there. And I find working through this is a lot easier on paper.

To be honest this negative and trying to get my brain around thinking that way is done on paper every night. I find journalling to be really beneficial in getting things out, but also for noting the positive things in your day... despite the pain, you can usually find something decent to say about a day. But it can, on other days, be damned hard. Which is what makes it an important undertaking.

What I do at th…

Yes I have #pain. No, I don't always mind when people don't 'get it'

What I was saying in the beginning of this image was that there are just going to be people who just don't get your illness. And that is fine. It doesn't in any way invalidate your illness. We do not need to prove it to them. We have that illness. We don't need to definitively prove it to any naysayers like it is on Us to show the evidence we are in fact sick.

AND... that is where the second part comes in. Because who needs those people in our lives anyway? Dealing with all that argumentation and doubt? None of this changes the fact you have an illness, but might change the amount of time you spend with that person. But, whatevs, you never liked that douche nozzle anyway.




We really don't have to get drawn into these arguments. Someone does not believe you are as ill as you say, as chronic as you say, or have the right diagnosis.... that is on them and whatever reason they have for doubting medical professionals. It is not on you, to have to validate its existence to t…

Lack of #Motivation issues

You see with chronic illness we have a life of inches, I think. A slower paced life. It takes a lot more effort to achieve any goal. It takes more energy to achieve any goal. So we should be proud of our inches. Here is the thing though. We want to live this life of moderation. We want to do things to help our health. Have a social life. Yet with chronic pain and illness comes this decrease in motivation. Part of that is pure pain. High pain motivated someone to not move much during it.

via GIPHY

Lately I have been having troubles with motivation. Which is something that can be a common issue for the chronically ill. We all have obligations in this life. We all have particular health goals we want to achieve as well. But some of us have pain. Some of deal with fatigue. Sometimes it is more one that the other and sometimes it is both. Not to mention other symptoms, but pain and fatigue compromise our motivation to accomplish tasks. Both sap our energy and give us only a finite…