I did some exercise! Sort of.

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I did in fact do some exercise in the technical sense of the word.

I got on a Exercise bike and I moved my legs on it so in fact I did exercise.

It caused tremendous and immediate pain on a level that is pretty indescribable except to say that it just got worse and worse and worse.

I tolerated 2 minutes of that torture.

Yes. Two minutes.

I know that sounds super lame and pathetic. And it is. But I have not been exercising for some time so I have to start at zero and zero means basically this horrible start point of epic pain from the get go.

It basically goes like this. Exercise is very, very painful. It always is painful. It never stops being painful. I do not understand these endorphins people talk about but I would sure like some of that business. In the beginning it is extremely excruciating for just a wee amount of time. Then you can add a little more. Like a minute. Then a minute more. Until you get up to 10 minutes consistently of this really intense pain, but no longer this extreme muscle exhaustion that makes you incapable of doing more than your, say, 2 minutes of excruciating pain. Then, you get to Past this 10 minute mark to this less painful zone I like to call muscle numbness, where the pain gets less intense for some strange reason. This once you have worked up to this point, likely another month or so of effort, lasts for another ten minutes. Then you hit another level of excruciating pain that is extremely sharp and jabbing and also like before... gets worse and worse and worse. And then you know, you must stop. That is alarm pain. So 20 minutes of very painful exercise. Takes you a good 6 months to Work Up to 20 minutes. And that was my max. I never did get beyond it. We will see if I can.

So in a nutshell that is that. Not fun. Not boring. Not a chore. Very painful. I exercise downstairs and after I have to use my arms to help crawl up the stairs. That sort of fun. After two bloody minutes. Actually after whatever minutes... the pain and muscle exhaustion just makes it very difficult to handle stairs.

Any it counts. Because it is my start point. Every two days and two minutes will gradually become more and more.

Why the insanity? No freaking idea. Apparently it does something.

Chronic Illness Bloggers Holiday Giveaway

Chronic Illness Bloggers Holiday Giveaway will run from November 23 to December 3, 2016. There are great prizes on line to win, some of which I have reviewed already. FibroCane or Organic Aromas both or which were my favorites and I use regularly still.

To ENTER HERE
 
There are 11 Prize Packs to win and value around $400 to $600. 2 of the Prize Packs are available only to US-based winners. As winners are chosen at random, if a non-US- based winner is chosen for one of the US-only prize packs the winner will have the option to either have the prizes shipped to a US address of their choosing or to forfeit the prize.
 
“This giveaway is sponsored by Chronic Illness Bloggers. Prizes have been donated by the following: Alisha Nurse - https://theinvisiblef.com/; Aromafloria -
http://www.aromafloria.com ; BackPainBlogUK - https://backpainbloguk.wordpress.com/  ; Bridgwater Crafts -http://www.bridgwatercrafts.com/ ; BeingFibroMom – http://www.beingfibromom.com ;Broken Teepee - http://brokenteepee.com/ ; Chronically Content - http://www.chronicallycontent.com ; Chronic Mom Life - http://www.chronicmomlife.com ; ColitisNinja – http://www.colitisninja.com ; The Fay Farm - http://www.thefayfarm.com ; Fed Up with Fatigue – http://www.fedupwithfatigue.com ; FibroCane – http://www.fibrocane.com ; Fresh Assist Spray – http://www.freshassistspray.com ; Gupta Programme - http://www.guptaprogramme.com/ ; HFactorWater -http://hfactorwater.com/ ; Kirsten Schulz - http://www.kirstenschultz.org/ ; Living Well Today - http://www.livingwelltoday.com ;Living Grace Blog - http://livinggraceblog.com/ ; Lupus Chick - http://LupusChick.com ; Megan Schartner – http://www.liveken.comMelissa Swanson – http://www.fibrowarriorslivinglife.com ; Mini2z - http://www.mini2z.com ; Organic Aromas –http://www.OrganicAromas.com ; Oska Wellness - http://www.oskawellness.com ; The Pain Free Life - http://thepainfreelife.com ;Patient Playbook – http://patientsplaybook.com ; Perfectly Ambitious Blog - http://www.perfectlyambitious.com/ ; Posture Pump –http://www.posturepump.com ; ProHealth – http://www.prohealth.com ; Rebuilding Wellness - http://rebuildingwellness.com ;Strength Flexibility Health EDS - http://www.strengthflexibilityhealtheds.com ; Sylk USA – http://www.sylkUSA.com ; Theraspecs -http://www.theraspecs.com ; Vital Plan - https://vitalplan.com “

To ENTER HERE
 

To ENTER HERE

 I personally like the Prize pack 8 because it has my two favorites in it. Those I mentioned above that I did reviews on and still use. Not to mention some books, which is my thing. So this is my favorite. You can see more when you register your entry. Check it out:

Prize Pack 8
  •  Gupta Home-Study DVD Programme donated by Gupta Programme
  •  FibroCane Serenitea; Daily donated by FibroCane.com
  •  6 Pack of H-Factor Water donated by H-Factor Water
  •  Self-Love 101 e-book (digital) donated by notstandingstillsdisease.com
  •  Flare Survival Kit donated by Mini2z.com
  •  Foggy Frog and the Pain Gang book (digital) donated by Megan Schartner
  •  Ravyn's Doll book signed donated by Melissa Swanson
  •  Raindrop essential oil diffuser from OrganicAromas.com
  •  Smoothie Jumpstart Course from Sue Ingbretson
  •  Suffered Long Enough by Dr. Bill Rawls donated by VitalPlan.com
  •  Living the Best Life with Fibromyalgia by Alisha Nurse

Sponsors

  • Rebuilding Wellness - http://rebuildingwellness.com
  • Strength Flexibility Health EDS - http://www.strengthflexibilityhealtheds.com
  •  Sylk USA – http://www.sylkUSA.com
  • Theraspecs - http://www.theraspecs.com
  • Vital Plan - https://vitalplan.com 
  • Alisha Nurse - https://theinvisiblef.com/
  • Aromafloria - http://www.aromafloria.com
  •  BackPainBlogUK - https://backpainbloguk.com  
  • Bridgwater Crafts - http://www.bridgwatercrafts.com/
  •  BeingFibroMom – http://www.beingfibromom.com
  •  Broken Teepee - http://brokenteepee.com/
  •  Chronically Content - http://www.chronicallycontent.com
  •  Chronic Mom Life - http://www.chronicmomlife.com
  • ColitisNinja – http://www.colitisninja.com
  •  The Fay Farm - http://www.thefayfarm.com
  •  Fed Up with Fatigue – http://www.fedupwithfatigue.com
  • FibroCane – http://www.fibrocane.com
  •  Fresh Assist Spray – http://www.freshassistspray.com
  • Gupta Programme - http://www.guptaprogramme.com/
  • HFactorWater - http://hfactorwater.com/
  • Kirsten Schulz - http://www.kirstenschultz.org/
  •  Living Well Today - http://www.livingwelltoday.com
  • Living Grace Blog - http://livinggraceblog.com/
  •  Lupus Chick - http://LupusChick.com
  • Megan Schartner – http://www.liveken.com
  • Melissa Swanson – http://www.fibrowarriorslivinglife.com
  •  Mini2z - http://www.mini2z.com
  • Organic Aromas – http://www.OrganicAromas.com
  • Oska Wellness - http://www.oskawellness.com
  •  The Pain Free Life - http://thepainfreelife.com
  •  Patient Playbook – http://patientsplaybook.com
  • Perfectly Ambitious Blog - http://www.perfectlyambitious.com/
  • Posture Pump – http://www.posturepump.com
  •  ProHealth – http://www.prohealth.com
  • Rebuilding Wellness - http://rebuildingwellness.com 
To ENTER HERE
 

Day 28 HAWMC Victories and Challenges

5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going
 
Thought I would add some extra laughs
 

Naming difficult things, yeah, that is easy peasy. There are a lot of difficult things that come with chronic pain conditions for me. Things that I really struggle with.

  1. Work: I have not been able to consistently manage work for over a decade. It has been working, then going on a short term leave, then working, then leave. Then a long term leave. Finally the pain clinic said, hey, you simply are not capable of working full time, which frankly, I knew, my family knew and seemed pretty obvious but had to be bluntly pointed out it seems. But when I tried That, I could also not function that way either. Even though simpler job with less stress. So now trying for yet another leave of absence. It is a tiresome struggle I must say. And one that is necessary because one needs money to survive. It is stressful. It never seems to have a lasting solution. And I am so tired of it all.
  2. Suicidal ideation: I put this under depression but really it is due to pain levels. And suicidal ideation I am told is pretty common with chronic pain and only becomes a major concern when it becomes suicidal intent. Which it has for me in the past. So my risk factor for suicide is pretty high since I had two prior attempts.
  3. The pain: Yeah the pain itself is a difficult struggle I attempt to deal with in a multitude of ways.
  4. The fatigue: You know it is hard to manage anything when you have zip energy to do literally anything. To think or move. Like your body is made of led. And you must have gotten no sleep at all ever in your Life, because you feel tremendously exhausted. Frankly, the lack of actual sleep probably does play a role in this.
  5. The cognitive dysfunction: Thinking through the pain haze is problematic when you add in migraine cognitive issues and FM fibro fog. Clarity of thought not my thing.

The small victories. The gleams of sunshine.
  1. Depression treatment: Literally keeps me going. My medication for depression literally makes me less suicidal when I am in a lot of pain. I am still depressed, of course, but it is not the same, at all. It is saving my life I think. Whereas before I was on antidepressants for migraine treatment... and they made me suicidal. I have that side effect on them all. I kept saying, they mess with my mood. But finally the pain clinic reviewed my medications and said, yeah, you can never be on those and put me on a different sort of depression medication. And damn, it works so fine.
  2. Meditation: It doesn't seem to work for pain for me. But it does something for me. It seems to quiet my brain, relaxes me and soothes me. As a constant worrier and over-thinker I sort of value this as a de-stresor for me.
  3. Hobbies: Hobbies are a pain distraction and self-care... they literally keep me going. I Need to focus on things that stop me from dwelling on the pain and fiction writing is that for me. It is part of my self-care on bad days. It is part of my rough mental health days to feel better. It is something I need for my well-being and I think we all really need things that boost our wellbeing.
  4. Support network: My support network are my peeps IRL like my mom and my spouse or those online like in groups I go to. Either way, they mean a great deal to me. They get me through life. If I have a problem they are there. My spouse is there to help me do things I cannot and encourage me to do things that are good for me. My mom always has my back and gives me rides to places I need to go, recommends vitamins and other things for me. We have to have our go to people that are there for us no matter what.
  5. Socialization: I am a hermit and an introvert. But there was a time when the pain was as bad as it is now that I was truly a hermit. I didn't leave the house aside from work. I didn't do anything else, because of the pain. And that isolation is not good mentally and worse, it made my spouse do the Same. So I promised myself due to my shrink at the times advice to start going out bit by bit to get some social time as a couple. And we have. Sometimes he goes alone, on bad pain days. Sometimes we leave early, if my pain spikes too much and I just cannot handle it. But we do socialize at least once a month. Sometimes twice. Which works for us.

Day 27 HAWMC: Selfie

Sunday Selfie: Post your favorite picture of yourself. Don’t be shy, it’s time to shine!
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I took this while on a vacation at a cabin. Just chillin.
Then I made a double exposure of it from another picture taken there!
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Review: Targeted Medical Pharma

"I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "
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Targeted Medical Pharma :  I review three products for this company. It was quite exciting because it targeted three important areas of my chronic condition: Pain, fatigue/cognitive function and the infamous sleep issues. All at the same time for the course of three months for the trial I took them for. I recommend reading the product information on the website yourself or even the links I provided you for some in depth into on what they are using. It is fascinating. I like their methodology and I like the products they have designed. So I am going to give a speel here on the products themselves. All of which you can find in detail on this page on their site because it is important to understand what they are doing here. Then I will follow with a personal review.

The Methodology

I should point out these are Medical Foods and they define these as "Congress defined "Medical Food" in the Orphan Drug Act and Amendments of 1988 as "a food which is formulated to be consumed or administered internally [or orally] under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation." Medical Foods are complex formulated products, requiring sophisticated and exacting technology, and that are used only for a patient receiving active and ongoing medical supervision wherein the patient requires medical care on a recurring basis for, among other things, instructions on the use of the Medical Food." Essentially they were looking at factors such as amino acids that are lacking or deficient in a specific condition and adding that back in with natural products. This an intriguing concept to me. It reminds me of the fact that most people are missing certain digestive enzymes and by taking them overall it helps with digestion. Important to note, they specifically say to take with medical advice. Which, of course, is recommended with all supplements.

 The supplements

Theramine –is a medical food for chronic pain disorders and inflammatory conditions containing a blend of amino acids and polyphenol ingredients is pecific proportions. As unhealthy individuals we do not exactly take in food and nutrients the same way. "Thus, the distinctive nutritional needs associated with a disease reflects the total amount needed by a healthy person to support life or maintain homeostasis, adjusted for the distinctive changes in the nutritional need of the patient as a result of the effects of the disease process on absorption, metabolism and excretion” (Thus their methodology) It turns out with pain increased nutritional requirements are required for tryptophan, GABA, choline, arginine, flavonoids, and certain antioxidants. This is interesting because a psychologist once recommended tryptophan for me actually and gave me a prescription for it. Tryptophan is a precursor to serotonin so it makes sense this one would benefit in pain. Some experience nausea, abdominal cramps, and diarrhea, but I had no side effects with it at all.

Additional review of tryptophan on WebMD: Mostly with this one, you want to remember it does turn into serotonin. So medications you are on that have that already are a consideration for your doctor.
Additional review of choline on WebMD
Additional info for GABA on WebMD
 
Sentra AM – Medical Food for chronic fatigue and cognitive function and they need increased nutritional requirements for choline, flavonoids, and certain antioxidants. They tend to have issues with reduced plasma levels of choline and have actually been shown to respond to oral administration of choline formulations. Choline reduced diets can result in the decrease of circulating choline. Patients with these conditions sometimes have activation of the degradation pathways that increase the turnover rate of choline thus leading to a reduced amount of production of acetylcholine for a choline blood level. Genetic dispostistion can lead to the accelerated degradation and thus to increased requirements in patients.

"Choline is required to fully potentiate acetylcholine synthesis by brain neurons. A deficiency of choline leads to reduced acetylcholine production by the neurons. Patientswith fatigue and cognitive disorders frequently consume diets that are choline deficient. Flavonoids potentiate the production of acetylcholine by the neurons thereby reducing fatigue and cognitive impairment. Diets deficient in flavonoid rich foods result in inadequate flavonoid concentrations, impeding acetylcholine production in certain patients with fatigue and cognitive disorders. Acetylcholine in pre-synaptic and post-synaptic ganglia is necessary for neuronal function. Provision of choline, flavonoids, and antioxidants, in specific proportions can restore the production of beneficial acetylcholine, thereby reducing fatigue and improving cognitive function" Choline is needed by diet. Some adverse reactions were nausea, abdominal cramps, and diarrhea but I had no issues with this one that is taken in the morning.


 Sentra PM – Is a Medical Food for chronic sleep disorders. The missing nutricinal requirements in insomniacs are tryptophan, choline, flavonoids and some antioxidants. As I said above I had been told to take tryptophan in the past and it was in fact for my horrible insomnia issues. I was quite pleased to see it on the list, as it is often recommended instead of sleep medications. People with sleep disorders have been shown to respond to oral tryptophan or a 5-hydroxytryptophan formulation. Reduced levels of tryptophan can lead to reduced serotonin, which actually I remember being informed of. Once again side effects include nausea, abdominal cramps, and diarrhea and once again, I had no issues with these.

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The review

Targeted Medical Pharma was the most comprehensive supplement program I have been on in some time. I rather liked the fact they gave me the three months trial since it does in fact take time to give supplements time to be effective. They are easy to take, morning, day and night. I just added them to my other morning, day and night pill sorter. I am equally impressed with their methodology and ingredients. 

The Sentra PM was the most effective for me and I found my quality of sleep was quite improved on it. I have some profound insomnia issues since childhood so it is very, very difficult to treat I am told due to it being so ingrained not to mention pain now complicating it. I already take two medications to get a sort of sleep and sometimes none at all.With this added into it I was actually able to get the full 8-9 hours of sleep. With very little wakings. I am quite impressed by that result. Only pain interfered with that result, because on high pain days I can just not sleep at all. So it was a great non-medication approach to enabling me to get an Actual Normal Sleep for once in my life.

I am unfortunately experiencing a massive flare of symptoms right now pain and fatigue wise so it was an inopportune time to see any improvement in those areas. My pain and fatigue have actually been substantially on the high side, so I wouldn't have noticed any improvement on that side of the scale. I was hoping to because it has been so, so much worse and maybe I in fact did but relatively speaking it is quite hard to say. I believe the approach is quite valid though such that it is well worth it to take. My experience with the Sentra PM for example and my excessively aggressive insomnia suggests I was in fact getting something from it. I do wish my pain hadn't been so aggressive lately as I would have liked to feel the response from that.

However, that being said... I have improved cognitively on Sentra AM. It wasn't able to do anything for this massive increase in fatigue I feel lately, but maybe if I am on it longer but I don't know the cause of that yet. But cognitively I did notice some clarity of thought. I have cognitive issues with chronic migraines, brain fog, aphasia, and just difficulties with concentration and confusion as well as fibrofog issues from FM. Overall I noticed, more clarity of though, more able to focus, less confusion. Ideas came to me easier. Still had trouble with my long term memory but short term was much better. Working memory seemed the same. It was a boost and I felt it. Trust me when I say the cognitive effects of my diseases I Notice. And Abhor. So when I get this clarity all of a sudden and ideas again. A plans and goals in mind. Yeah, I felt the change all right.


*For Canadians you might be aware until recently tryptophan was prescription only, as it was when I took it myself and it says here and here it was removed 2012, however, many doctors still do it by prescription basis. Interesting history of tryptophan here.
 
 

Day 25 HAWMC: Health and pain care

As health activists, we are on a mission to innovate healthcare. If you could change one thing in the healthcare landscape right now, what would it be?

Doctor

I am Canadian not American. If I were American there are more than a few things I would change because I know people who suffer under a system designed in such a way. Nevertheless, I am not.

I live in Canada. We have great healthcare. I go break a bone, go get it fixed at no cost to me. Bravo. But say they prescribe a medication for it. I have to have a plan through work. If I don't I pay out of pocket. If I have a crappy insurance plan then I pay most of it. I personally have 80% coverage, my spouse has 80%, so I pay nothing, usually.

What I would change is that medications are also free to patients and are a part of Healthcare. I say this because by the government taking it on they actually would save money in the long run and people would be able to get any medication they needed. Not just the ones they can afford on their plan. Or if they have no plan, not just the medications they could afford. My medications are not cheap. I have looked at the prices. The amount of money I would need to pay for them? Literally impossible. Someone with my health without a plan coverage? Would never manage it.

That is an idle fantasy of mine.

Depressed sad bandaged injured man going to have an enema proced

Also a big one I'd like to see:

What I would also do for pain patients in particular is open more pain clinics. Much more multidisciplinary pain clinics. Each patient would have access to free physio treatment, yoga classes, mindful medication classes, session with a psychologist to assess mental illness, a psychiatrist visit to assess medication if they are mentally ill. Exercise classes to have instructors there to help them slowly, and correctly, learn what exercises they need to do and learn how to do them. Pain doctors to assess treatments and medications as well as overall response to all treatments. Comprehensive program would last a year for chronic pain patients. After that they could continue to see a psychologist, if needed. And most would continue to see pain doctors. There would be the expectation they would continue with the rest of the program at home. Yoga program would continue to run as would mindful medication for anyone who wanted to sign up for additional work.

Ideally there would be wellness centers as well covered federally so that people could go to a center and get physio, acupuncture, and other highly recommended alternative treatments free of cost. No more out of pocket business. So you would get a referral to the pain clinic first. And in your follow up care to the Wellness center for other things to help you manage your pain along with the routines you had established.

That is what I would change. Medications and alternative treatments, free and comprehensive pain clinics with longer programs and More of them for patients.

My final change... doctors get taught a lot more about pain in school.

Day 24 HAWMC: Picture it

Choose 3 images that represent your health focus. Share the images in a post and explain why you chose each of them.
 
just-breathe-through-thepain

I choose this one because I am focusing on this in pain management to decrease the suffering that comes with chronic pain. Not the pain, which I cannot control. But the suffering. Things like meditation which is important to get into the habit of and I find quite useful. Other things are a gratitude journal, a mood journal and distraction techniques. Then of course, relaxation breathing for when the pain is brutal.

say
This one words and all I choose because of the nature of the Facade we use to mask our pain. I use humor as a firm base to mask my pain and when I don't use that I am very stoic and quiet. Either way, I have to remind myself that not communicating about my pain isn't always a good thing. I am the sort of person who prefers to suffer in silence. I don't like the pain game. Where I say I'm having a bad day and someone inevitable has to point out how there elbow hurts. Or that they feel worse. Or that it could be worse for me. So I generally just prefer to not mention it at all. And I downplay it to doctors because of gender bias. And I firmly believe that my loved ones would prefer not to know how I actually suffer. So silence it is. But this is confusing. To everyone but me. It is important to communicate pain so people understand where you are at and what you can and cannot do that day. So they understand, in my case, my silent moments when I don't laugh and am in high pain are Not anger, which is also how I am angry. Confusing, right? I don't like to speak in anger, so I tend to not speak at all under I chill out. I have to learn a facade is Useful but it isn't a permanent state of affairs.
 
pain-changes-us-all-into-effing-warriors2
Well, I want to be a fighter. And reminding myself I have survived this long helps with that. I have fought hard and long and sometimes I feel defeated by this war. And I get there is no victory in this war. But there can be battles I can win. So I want to be the warrior. I want to be a fighter who continues to thrive. Because I tell you sometimes I do not thrive and I do not want to fight at all.

Day 23 HAWMC Not real?


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Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition. Was there any context? What did you think at the time you heard it – and what do you think of it now?

I've heard some pretty ludicrous things to be honest about migraines, depression and fibromyalgia. But I would say the worst one systemically is that fibromyalgia is not real... and it is a garbage diagnosis.

I once had a severe case of costochondritis with my fibromyalgia, which is the rib cage inflammation that causes chest pains. It was due to a summer job I had in university at the time. I was a baker and it required heavy lifting and repetitive movements. The pain started slowly as just sharp jabbing pain and got worse and worse, until it was all day and all night. I had this suffocating feeling and constriction. Nearly passed out on day after drinking, likely because That made it worse. Well, that landed me in the ER. Clearly it wasn't a hear thing but I had no idea what it Could be. I see the doctor and in a snide tone he says it isn't a heart attack. Really? You mean they don't last months? Moron. Anyway I say, yes I realize that, do you think it has something to do with my FM? He says he doesn't believe in FM. And then did no tests at all and sent me home. Because clearly I was exaggerating if I had an imaginary condition that HE didn't believe in. I had to go to my doctor three hours out of the way to conform it was in fact the chest wall pain and get the proper anti-inflammatory treatment.

Point is... he didn't believe in it. So he Didn't Treat me.

Or they don't believe in it... So it is all in your head... and they don't treat you.

These are dangerous and useless doctors.

They could choose to still be doctors and examine the patient and figure out what is going on, if not FM, then what? Just what? Like my costochondritis example. Yes people with FM get costochondritis easily and often and is lasts long periods of time. But you can also get it from a virus and lifting heavy things. So, logically, the moron should have looked at that. Easy enough to diagnose.

But when you completely ignore what a patient has and do not treat them. You are ignoring what they effing Do have. Those symptoms they do have. The pain they do have. The sleeping disorder. The cognitive issues. And the fatigue. And their comorbids like IBS and others. Why don't you treat them symptomatically then? Or why don't you try and find out what they DO have if you are so effing brilliant.

This notion by the way spreads. People start saying it is a fake disease. That it is isn't real. That it is all in our heads, as in crazy. That is where it hurts. because people are being told this crap from family members, random people, co-workers, friends and loved ones. How would you like it if a loved one said 'It is all in your head... if you were just more positive I am sure that would help.'?  Yes, people assume positivity is going to cure us all. Yes, it is amusing but not helpful in the least bit.

If these doctors had any brains at all they would take that patient and see if they could prove what is in fact wrong with them. If it isn't fibromyalgia. And if that patient got better he could then say some patients are indeed misdiagnosed. But DO something.

Day 22 HAWMC: Pro tips

Tip Tuesday!Have you mastered the hashtag? Figured out the Instagram algorithm? Or maybe you have a few tips to in crease your blog followers. Whatever it is, share your expertise with your fellow HA’s - it’ll only make our community stronger!
I don't know if I have any Pro-tips that I didn't mention in my previous post. Like the always use a image in your blog and the article I posted about good ways to go about that.
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So there was that, that I had previous mentioned. Very important to have visuals of good quality to match what your post is about and draw people in. 

2-For engagement I follow a simple recipe on my Facebook page that gets me good engagement. Minimum I post three images I have made and thee articles I have found. The rest like shares I have shared to the page is all bonus material. Share other pages when they ask you to, and they will share back. Promote other bloggers. Post your images in support groups you are in... usually my amusing ones or ones people can easily relate to.

3-for your blog the best thing I can say is get to know other bloggers. Meet those in your blogger community blogging what you are blogging about. Add them to your blog roll. Ask to interview them.  Gets your name out there and you really connect with other bloggers.

4- Do these sort of events. These blogathons for causes that are important to you. Any cause that is important support on your blog.
For the most part my followers were gained naturally. I had a consistent natural pace of increase. Recently I added a mailing list, that does help. MailChimp is great for that.

Day 12 HAWMC: Sunny days

Monday Motivation:What's your life slogan? Explain what words or mantra that keep you going and why.
 
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It can't rain all the time.

If you give the context of the movie perhaps you'll grasp I'm not exactly a glass half full sort of person. In fact I have depression as well as chronic pain. Chronic pain came first and one would suspect it is inevitable that one would develop depression from that. But it isn't. It isn't inevitable, just more probable. I dealt with a milder version of depression when I had fibromyalgia when I was younger, that is just FM by itself. And I got through that. Then the chronic migraines came along and deeper depression developed. But I remind myself it can't rain all the time. Bad pain days are the worst for mood, but bad pain days are not every day, are they? Or not all day every day. It does fluctuate somewhat. There is another saying; it is a bad day, not a bad life. I do not like that one as much because my mind goes, well, it was a bad week, no month, well year... okay decade. And so depression doesn't like that saying quite as much.

It can't rain all the time suggests there will be a day when it isn't. Suggests you just have to get through the bad weather. Maybe the rain has sunk into your bones and chilled you to your soul, but maybe tomorrow the clouds will break, for a moment or two. Because even with pain and depression it can't rain all the time.
 
I for on see the irony in liking this phrase by the way with my migraines and massive photophobia... I wouldn't mind if it rained all the time. Sunny days? No thanks. Too bright. But also no abrupt thunderstorms. Those are migraine hell. So just cloudy and a sprinkle. Yeah. That is just right. That aside, still love the saying.

It says, hey, yeah you are suffering now and I get that. We have to accept the rain. We have to survive the rain the best we can. But not every day is going to be rain. There is hope. There is an acknowledgment of the fact not every day is the worst of days. There is variability in our chronically ill weather. I understand the weather will always be turbulent and we have to prepare for that weather, we always will have to, but there will be unseasonably good days in there.
We all have gleams of sunshine.
It can't rain forever.png

Chronic Illness Bloggers Holiday Giveaway

Chronic Illness Bloggers Holiday Giveaway will run from November 23 to December 3, 2016. There are great prizes on line to win, some of which I have reviewed already. FibroCane or Organic Aromas both or which were my favorites and I use regularly still.

To ENTER HERE
 
There are 11 Prize Packs to win and value around $400 to $600. 2 of the Prize Packs are available only to US-based winners. As winners are chosen at random, if a non-US- based winner is chosen for one of the US-only prize packs the winner will have the option to either have the prizes shipped to a US address of their choosing or to forfeit the prize.
 
“This giveaway is sponsored by Chronic Illness Bloggers. Prizes have been donated by the following: Alisha Nurse - https://theinvisiblef.com/; Aromafloria -
http://www.aromafloria.com ; BackPainBlogUK - https://backpainbloguk.wordpress.com/  ; Bridgwater Crafts -http://www.bridgwatercrafts.com/ ; BeingFibroMom – http://www.beingfibromom.com ;Broken Teepee - http://brokenteepee.com/ ; Chronically Content - http://www.chronicallycontent.com ; Chronic Mom Life - http://www.chronicmomlife.com ; ColitisNinja – http://www.colitisninja.com ; The Fay Farm - http://www.thefayfarm.com ; Fed Up with Fatigue – http://www.fedupwithfatigue.com ; FibroCane – http://www.fibrocane.com ; Fresh Assist Spray – http://www.freshassistspray.com ; Gupta Programme - http://www.guptaprogramme.com/ ; HFactorWater -http://hfactorwater.com/ ; Kirsten Schulz - http://www.kirstenschultz.org/ ; Living Well Today - http://www.livingwelltoday.com ;Living Grace Blog - http://livinggraceblog.com/ ; Lupus Chick - http://LupusChick.com ; Megan Schartner – http://www.liveken.comMelissa Swanson – http://www.fibrowarriorslivinglife.com ; Mini2z - http://www.mini2z.com ; Organic Aromas –http://www.OrganicAromas.com ; Oska Wellness - http://www.oskawellness.com ; The Pain Free Life - http://thepainfreelife.com ;Patient Playbook – http://patientsplaybook.com ; Perfectly Ambitious Blog - http://www.perfectlyambitious.com/ ; Posture Pump –http://www.posturepump.com ; ProHealth – http://www.prohealth.com ; Rebuilding Wellness - http://rebuildingwellness.com ;Strength Flexibility Health EDS - http://www.strengthflexibilityhealtheds.com ; Sylk USA – http://www.sylkUSA.com ; Theraspecs -http://www.theraspecs.com ; Vital Plan - https://vitalplan.com “

To ENTER HERE
 

To ENTER HERE

 I personally like the Prize pack 8 because it has my two favorites in it. Those I mentioned above that I did reviews on and still use. Not to mention some books, which is my thing. So this is my favorite. You can see more when you register your entry. Check it out:

Prize Pack 8

  •  Gupta Home-Study DVD Programme donated by Gupta Programme
  •  FibroCane Serenitea; Daily donated by FibroCane.com
  •  6 Pack of H-Factor Water donated by H-Factor Water
  •  Self-Love 101 e-book (digital) donated by notstandingstillsdisease.com
  •  Flare Survival Kit donated by Mini2z.com
  •  Foggy Frog and the Pain Gang book (digital) donated by Megan Schartner
  •  Ravyn's Doll book signed donated by Melissa Swanson
  •  Raindrop essential oil diffuser from OrganicAromas.com
  •  Smoothie Jumpstart Course from Sue Ingbretson
  •  Suffered Long Enough by Dr. Bill Rawls donated by VitalPlan.com
  •  Living the Best Life with Fibromyalgia by Alisha Nurse

Sponsors

  • Rebuilding Wellness - http://rebuildingwellness.com
  • Strength Flexibility Health EDS - http://www.strengthflexibilityhealtheds.com
  •  Sylk USA – http://www.sylkUSA.com
  • Theraspecs - http://www.theraspecs.com
  • Vital Plan - https://vitalplan.com 
  • Alisha Nurse - https://theinvisiblef.com/
  • Aromafloria - http://www.aromafloria.com
  •  BackPainBlogUK - https://backpainbloguk.com  
  • Bridgwater Crafts - http://www.bridgwatercrafts.com/
  •  BeingFibroMom – http://www.beingfibromom.com
  •  Broken Teepee - http://brokenteepee.com/
  •  Chronically Content - http://www.chronicallycontent.com
  •  Chronic Mom Life - http://www.chronicmomlife.com
  • ColitisNinja – http://www.colitisninja.com
  •  The Fay Farm - http://www.thefayfarm.com
  •  Fed Up with Fatigue – http://www.fedupwithfatigue.com
  • FibroCane – http://www.fibrocane.com
  •  Fresh Assist Spray – http://www.freshassistspray.com
  • Gupta Programme - http://www.guptaprogramme.com/
  • HFactorWater - http://hfactorwater.com/
  • Kirsten Schulz - http://www.kirstenschultz.org/
  •  Living Well Today - http://www.livingwelltoday.com
  • Living Grace Blog - http://livinggraceblog.com/
  •  Lupus Chick - http://LupusChick.com
  • Megan Schartner – http://www.liveken.com
  • Melissa Swanson – http://www.fibrowarriorslivinglife.com
  •  Mini2z - http://www.mini2z.com
  • Organic Aromas – http://www.OrganicAromas.com
  • Oska Wellness - http://www.oskawellness.com
  •  The Pain Free Life - http://thepainfreelife.com
  •  Patient Playbook – http://patientsplaybook.com
  • Perfectly Ambitious Blog - http://www.perfectlyambitious.com/
  • Posture Pump – http://www.posturepump.com
  •  ProHealth – http://www.prohealth.com
  • Rebuilding Wellness - http://rebuildingwellness.com 
To ENTER HERE
 

Day 20 HAWMC Journey

What has been the highlight of your health activist journey? We want to hear all about it, perhaps a conference, a podcast or meeting a fellow HA. What made this experience so special?
 
I have not met any other activists in real life. I do not travel well or have expendable money.
 
I will say a migraine activist by the name of Teri Robert (Putting Our Heads Together) inspired me a great deal. Back in the day when there was little information out there, little support groups... not much of anything she was the resource of information of migraines. I had been researching on my own for Fibromyalgia at the time. But I needed to know more about migraines because they were becoming a Problem.
 
I learned from researching on her site that one cannot take too many OTC meds or Triptans without rebounding. Something I was never told. I was simply told to take them when I had a migraine. So I knew going forward, as the frequency was increasing to watch that. I learned what a status migraine was and that I needed to go to the ER for it... sadly the ER never knows what they are or how to treat them, but that is another problem altogether.
 
I learned the types of migraines I had. I learned the symptoms that are often not even mentioned. I learned about all the bad information out there.
 
I became an informed patient because of her.
 
And I began to actively share the information I was learning on my blog. More and more as the years went on. And eventually started a blog just for migraine information: Migraineur mutterings and musings.

Day 19 HAWMC: Rough days

Everyone has tough days, but how do you pull yourself out of the rut? Maybe you blog, repeat affirmations or listen to a favorite playlist. Write about what tools, tips or practices you use to lift your spirits after a rough patch.

2-5

I'm an introvert. I know. Surprising. As such, when I have a rough time in anything but especially pain wise I need down time. I need some me time. I need to chill and recoup.
Especially self-care.

What I find most important on these days are the things I intrinsically find pleasure in in and of themselves. Things that make me happy. Which all happen to be introvert things it so happens because that is indeed what I am. If you are not, it might entail things like leaving the house... in which case you might have to improvise and do things like invite people over, play video games with people online, facetime, call people... extrovert things. I admit extrovert things are not my forte. I always thought ambiverts though were very fortunate people. Sadly, not one of those either.

So what I like to do?

  • Blog- I get into my blogging time as I form of stress relief to talk about what I am in fact going through. Or discuss the topic of what I am going through.
  • Reading- I love, love, LOVE to read. And it is a great pain distraction.
  • Write- I also equally love fantasy fiction writing. My favorite hobby.
  • Coloring- I like to color, it is said to be close to meditation. My limitation is the nerve damage in my dominate hand, so I cannot do it long, unfortunately.
  • Netflix and chill- Binge a good show? Hell yeah.
  • Meditate- To just get in a calm zone I do some meditation. Twice a day. Once before bed.
So on days when I cannot do anything else, as in it has been really rough and I didn't get any housekeeping done and couldn't run errands... and just couldn't do any exercise. I feel so bad and non-productive. I just have a relax day. I fill it with the things that I enjoy and that I can do. And I also rest, because I often need it.
Then there is also taking a nice bath, not too hot because that makes me pass out dizzy... but just right, with Epson salts. And then in the bath I have some tunes playing. And just relax and soak for a bit.
We need this rejuvenation days. I call them recovery days. Bad pain days and recovery days. When we need the rest the Most. And non-guilty days as well. Self-care days.




Day 17 HAWMC: Rest

Throwback Thursday! Grab a post from your archives and repost it! Add a few sentences at the beginning to frame it. Why you chose it. Why you liked it. And why it should be shared again.
 
This is one of my favorite posts. It is a really simple topic. But one that fails to get through my fat head many a time. That I cannot push through the pain, exceed my limits and just hope for the best with that method. I have to pace myself. Conserve my energy and, yes, rest. Without guilt.
 
 
 
5-1
 
1)Do stuff
2)Stop it.
3Lie down

I see a psychologist who specialists in pain management to help me with all that lack of pain management. It is all about relaxation techniques, meditation, biofeedback… blah, blah, blah. There is a fundamental flaw in all of this and that my failure to grasp the three steps outlined above.

Fundamentally along the way with chronic pain we figure out to mask the pain and to push through the pain… all in the aim to function on some level. Often a crappy un-fun level, but what counts is that we do things. And doing things is what is important to people. Other people mostly. Other people who do not have a pain problem. You suck other people. Anyway, we get this mental line. We have Intolerable Pain and Tolerable Pain. Functional Pain and Non-Functional Pain.

That just seems like a chronic pain fact of life. The chronic pain life-style. Obviously one that does not work well when the pain exceeds our coping but for the most part it just is the way it is.
So we have that learned behavior of masking pain plus trying to function through it. Then we have the compounding issue of every time the pain is intolerable or we are non-functional we can be plagued with guilt for not being able to do all those things that the ‘peoples’ want us to do. Guilt can be a rather large compounding factor, even if it is just so wrong that we plague ourselves with guilt over an illness that is not something we can control. The final compounding factor is that people tell us we should actually be able to control it and we really are to blame.

Well what does any of that have to do with anything? It means for me that being ‘productive’ seems to have a lot of extra ‘meaning’ attached to it. It isn’t how much pain am I in today, it is how much was I able to do, even though I was in pain. How much of the day did I ‘lose‘ to pain. Such that even though I am told to do all these helpful techniques that might help manage my pain… it feels wasteful to me. So wasteful to meditate for a half-hour when I could be slowly doing some housecleaning which likely will trigger a migraine earlier, compound the one I have and definitely cause other pain… but productive. Then, oops, caused a massive migraine and there goes the rest of the day and I didn’t fit in that meditation or relaxation I was supposed to do. Damn it. I feel in some way that using the small gap of the day I have without a migraine doing non-productive things is wasteful and I should feel guilty about that. Yet other people are permitted downtime and relaxation free of guilt. I won’t even let myself do things that could improve my existence because I have conditioned myself to ‘get things done’ in pain and to feel bad about it when I don’t, so I need to fill all that low pain time with as much as I am capable of. So while we are conditioned to feel guilty about what we cannot do, we are at the same time told we should be able to control our illness to an amazing degree, but without actually spending any time on it apparently… because we have to be as functional as everybody else.

That is a conflicting message people. So. 1) Do stuff 2) Stop it 3) Lie down. Concise simple rules to relax. How you relax is up to you. The stuff you do is up to you. And maybe you prefer to sit rather than lie down. But every day give yourself the downtime to do these simple steps for you and your health. If you are anything like me stop this silly notion that you must fill every moment of every day, that would be the functioning moments, with ‘productive’ and ‘worthy’ activities. Just stop and absorb the silence for a moment (or if you are also like me and have tinnitus, you might want to stop and just listen to some mellow music. No one likes the sound of high pitched ringing. Not relaxing.) I don’t care if you give yourself 10 minutes or half an hour. But you deserve to give yourself a little peace each day. I know the studies on meditation are pretty awesome so it could be quite beneficial for us to give ourselves this time to engage in meditation, relaxation techniques of some sort or biofeedback.

Also screw guilt. I hate guilt. I hate the people that imply we should feel it. I hate that I think I should feel it. It is so fundamentally useless.

and one thing we can do for ourselves is 1) Do stuff 2) Stop it 3) Lie down.

Day 18 HAWMC: You know you hate it…

What’s a health cliché that really bugs you? What are you tired of people asking you or saying to you again and again? Write it down. Then reclaim it! Take it back and turn it around so you make is something you could be comfortable hearing.
 
You lost weight, you must be feeling better. Conversely, when I gain weight, I must be feeling worse. This concept that ‘skinny’ is healthy and ‘fat’ is unhealthy is driving me nuts.
 
I gained weight from hypothyroidism and then more for medications for migraine prevention. Top weight was 165 pounds on my five foot four body. And I got comments on how better I would feel if I exercised and ate right. Implying I was doing neither. Like they even know what the chronically ill Do for their health. They do not.
 
Then I lost some weight being put on Topamax. And then even more from becoming nauseated in the extreme for a year and ongoing. Down to 120 pounds. And Now, well ‘You look Great, you must be Feeling so Much Better!’ You mean other than the constant nausea and the vomiting and lack of appetite and wishing I could just eat for once? Well no, because I am still chronically ill. I know weird, it is like it is chronic or something.
 
We lose and gain, lose and gain because we are chronically ill. Meds, nausea, treatments, illness… all cause different types of weight issues. Skinny can actually mean ‘worse’ and gaining weight can actually mean ‘successful treatment’.
 
I turned it around by making this meme: Because I get when I am skinny I even appear less sick than I did before. For whatever reason. So I wanted to show that I get it, I don’t look sick… because I am that awesome!
 
dontlookill
Then I made these ones as well because people liked the first one so much

 

Day 16 HAWMC: Advice to activists

Wisdom Wednesday: What advice do you have for health activists just starting out? Share your words of wisdom for all the health activist rookies out there!
 
Just starting out. Well first thing is pick your platforms you want to use to go with your blog. Too many is never a good idea. For example for my blog I auto-post to Facebook and Facebook auto-tweets to Twitter. And then I post 3 articles and 3 images to my Facebook account and manage my Twitter. That is sufficient. I do auto-post to G+ but rarely manage it. So choose what you like best. Instagram? Facebook? Pinterest, mind you if you do content creation for your blog and Facebook Pinterest is a friend.
 
When it comes to posting my best advice is fourfold: 1) Tell your story in the most honest way possible and to the best of your ability in every post you make. 2) for some posts send a specific message. Design a post like '8 ways chronic illness ____' or '10 ways migraines ____' because those posts are concise and readers do like them. 3) do not fear a good rant post because you need to express that rant as much as other Relate to it and others need to Read it. 4) always source your research

Remember your story is important. Your experiences are important. And your words could make someone else feel less isolated. Could bring other together. Can answer questions people have. Share vital information. You could be the inspiration they need at that very moment. 
 
_to-not-have-your-suffering-recognized-is-an-almost-unbearable-form-of-violence-_
 
Also remember that there is a great community of activists out there. A great community of bloggers as well. Get connected with them. Exchange posts. Share insights. Join groups where they brainstorm ideas and campaigns. Participate in campaigns to raise awareness. You will find a lot of support and great resources from others.
 
So my Blogger Tip for is use images always. For visuals here is an article I wrote Graphic design sites to check out
 
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Day 15 HAWMC

We are on day 15 of the WEGO health activist blog challenge!
Time to spread the love. Shout out all your favorite HA’s! Make sure to share a few sentences explaining just how grateful you are for them
 
 15085534_10154690839854254_5495513182613128825_n

It is great to see a community of bloggers get together and spread awareness about their conditions. Why I love blogathons to be honest. There have been some great posts along the way and some great bloggers.
 
 
 
Dear Dr. What’s-Your-Name… I think I have in fact met this doctor. He and others like him is why I don't go to the ER for status migraines. Because they don't care. They don't treat me. And why when I Didn't go to the ER for a status migraine I ended up with permanent nerve damage. Hell, it wouldn't have made any difference had I gone. Even when I went to My doctor at the time about the nerve damage he said it was likely a form of persistent migraine aura, even though I told him that tactile persistent migraine auras were exceptionally rare and this didn't even feel like that.
 
Dear Yahoo, This may sound silly, but…by Janice Tindle  This one gets extra credit for the rare disease of Visual Snow, which I also have. Used to be considered part of a persistent migraine aura until recent research determined it is its own entity, however, 50% of people with VS actually have migraines as well. Her vision sounds a lot like mine with VS, migraine with aura and persistent migraine auras. I suppose mine is a little funky all the time.
 
Enter Quote, Stage Left… #HAWMC Day 3 This was just one fun post to read.
 
Check out WEGO Health to see more posts or on twitter #HAWMC

Day 14: HAWMC : rant it out

Case of the Mondays.Write about something that gets you down, burns you out, or makes you sad.Purge it in a blog post. Turn it around at the end and tell Tuesday why you’re ready for it.

Pain makes me sad, well depressed. The more pain the more depressed I am. And the pain has been up there for months.

I have been really worried about my long term disability appeal. I get that I am disabled and I get that I cannot work, as my doctors tell me. But this is proving it to an Insurance company and that is like a toss up. It is so random their decisions. I don't know who their specialist are they consult... it could be a nurse or something and not a specialist at all for all I know. I don't know what proof they need? The lesions on my brain? That should be sufficient really. What about impact on my life? That should count for something. I worry because I am powerless in a decision that is vital to me. They have all the power and their actual job working for an insurance company is to not keep people on disability, get them off of it, not get to many on it. And your life holds by a thread to someone who wants to be within an issuance quota. It scares me so much. I have been getting wicked migraines and not being able to sleep, which makes the migraine worse and the FM worse. The depression gets worse when I think about this and what could go wrong.

I ran out of money because I am not working while I am waiting and things are getting really, really difficult for me at this point. So I am stressing about the house finances every since day. 



 I have no power over these things that are stressing me out. So I have to stop thinking about it and focus on my emotional care, lest that get out of control. I have to focus on my meditation and stress reduction. All I can do is manage my thinking, my pain and moods. When there is a stress you have no power over... just don't think about it.

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...