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Tuesday, December 6, 2016

Remembering discrimination at work


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I managed to upset myself with a memory. I was reading an article about malicious gossip and how to deal with it. Pretty benign. And then I thought about times I have dealt with that in the office. Mostly hearing it, and trying to be neutral because I loathe malicious gossip so much. I really cannot stand people who indulge in it. Anyway, then I remember the time when I heard about it directed my way.

And the memory was like a punch to the gut. This sense of real sadness. Because it wasn't about Me, it was about me being chronically ill. So you'd think it wouldn't bother me. But of course it did because I am the sort of person who literally believes everything is my fault even when there is no humanly possible way it is my fault. So I feel ashamed for being ill when I have no reason to be. Guilty when I have no reason to be. And when people blame me for being ill, think I am slacking, am not in as much pain as Whatever... I feel ashamed I have chronic pain and am failing. I know, at the time, a lot of that shame came from my employer at the time who actually told me I was failing my co-workers, my customers and myself. And I Believed it. She actually also told me other employees were complaining to her about my missing work and having to pick up the slack, which everyone said wasn't true... but I believed that as well. Because the pain was Winning and I was sucking. I was failing. Who wouldn't think that I sucked?

I was mentally in a very bad place because of the pain. Not a good time to be giving me ultimatum and making me feel ashamed about the pain. The pain which I felt was out of control and I had completely lost all hope of every managing. So bad mental spot at that time. And it did rather go downhill.

So the advice in the column doesn't really apply or wouldn't for me at that time. Because we self-blame. We remember being healthy. A lot. And we feel so guilty we cannot function like that. So we push ourselves. A lot. And that makes things so, so much worse. Then we blame ourselves for that. We take any sign from Anyone that confirms this blame that we should in fact feel shame and blame and guilt. Then comes depression. But we think, well, we are depressed because of the pain. It is just normal. Who wouldn't be depressed? Who wouldn't feel utterly worthless?

I wish I could tell people who work with people with invisible disabilities what not to do and what to do. I wish I could have re-written that time. I would be in a lot better place if I had just said, stop, that is discrimination. Let's try working on ways to help me manage work, not ways to make work so much worse. I haven't been able to function since then. I suppose because the depression and pain got so much worse. The pain because of the stress. The depression because, of well all the negative thought processes I went through. Just got embedded in my head. Just the memory of it still makes me quite sad. Also angry, yes, obviously angry, but very sad. And I could have died from the suicide attempt that was the end result. I was lucky I didn't. That is the power of a bad work environment. One employer can just destroy your self-worth. And actually make you worse in the long run, ironically. All the things they tell you not to do for pain, are the things you end up doing. All the things that are very bad for a person mentally, are what the employer does, because they somehow think it is 'motivating'... like you are some lazy child who doesn't want to do their homework. I am aware I got substantially worse physically and mentally during that time. I am aware I am better off not being there...as in you literally could not Make me go back there Ever.

Much more difficult to fix the damage. My psychologist says I have a real issue with self-worth. Huh. Makes you wonder where I got that from. But, yeah, you have to believe what is shoveled at you. And I did. We tend to do that when we are chronically ill. I really wish employers had proper training. Maybe from someone with a disability themselves. I am quite ill now and can't work full-time or straight up hours, but I had quite a great manager recently. I was quite impressed there. And I wonder if it simply is that he is considerate, listens, non-biased and wants a functioning team in all respects? Not sure. But having someone come in and speak with management one on one, or in a group... seems logical to me. Hell, I'd do that (and hey, I could set my own schedule! lol). Because some of them seriously need it. They need to understand some things you simply Cannot say. Other things that should not be done. And ways you should approach things. It isn't rocket science. It is respect, it is motivation, it is helping them so they can be productive for you and taking care of how you phrase things.

I wish I could tell someone in the same situation I had been in. In survival mode. A lot of pain. Dealing with management like that. I wish I could tell them not to believe the things they hear from anyone especially management.That they should report it. Report it. Report it. Like I never did. Do it. Every damn time. And I would tell them you are chronically ill. It is not your fault. You did not cause it. You are not to blame for it. You have no reason to feel ashamed or guilty. Ever. You are worthy and strong. Keep on doing what you are doing and ignore the rest. Remember to report.

I actually blogger about all of my time there. You have to back pretty far to see it. But yeah fun stuff.

Isolation in the Great White North

There is a difference between being alone and isolation. Sometimes we want to be alone. To recharge. We have to conserve our energy. Manage our fatigue. And being alone, isn't always lonely..png
I am going to tell you a secret. I am an introvert. It is true. I'd rather write on this blog than talk to anyone really. And I do not find this to be a problem. I like being an introvert. I think introversion is pretty awesome. I think a great deal about everything. I am introspective. Philosophical. Contemplative. Reserved. Reclusive. Hermit. All right so the last part seems to be the 'issue'. I have a lot of hobbies. And they all involve me and the indoors and not the outside world and people.
So what?

So my psychologist thinks isolation is a Big Deal to people with chronic illness who are not working (currently, as that is a work in progress, my leave that is) and isolation is a factor in depression.
And Winter is a Isolating factor in Canada.

I personally do not want to go out in This. As in, my back yard.

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It is cold out there. It is windy and it is cold. And pain is worse when it is cold. And I want to hibernate all winter long. Is that so wrong? No, no it is not.

He suggested some sort of charity work that was the sort you could not have a rigid scheduled. I mentioned something online. He said, no real people. I mentioned those people at the SPCA that pet or walk animals. He said, No People. I don't think he quite grasps I don't like peoply places. That it isn't a necessary thing for me. That I have some socialization every month and that is okay by me.
I don't feel isolated. I am not lonely. I enjoy my hobbies immensely. I fail to see the problem to be honest. I think if I crave people I can just go be around them... like go to a cafe and bring my laptop with me. Or go for coffee with my mom and actually have some social time.

Also pain and fatigue. I was telling him how immensely fatigued I have been. Such that when I have an errand to run... I have been putting it off. By the by, my doc says that I should also exercise and get out of the house to help manage the fatigue. So far, not helping. Just more fatigued. It actually really makes this concept difficult. To do anything on any sort of schedule that is. When I feel any teeny bit of energy I do get those errands done and it drains me. I need to up my B12.

Anyway, point is isolation seems to be an internal thing. I have felt it in the past for sure. But right now I do not. I feel profound relief I am not working at the moment. Not isolated. Just profound, utter, relief I do not have to work in the pain I am in right now. And we all feel isolated somewhat in the winter, here and other bitterly cold tundras, because it is harder to get out and do things. So we do have to make some effort to find things to do outside of the house at least once a month.

Tuesday, November 29, 2016

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.

Monday, November 28, 2016

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.

Sunday, November 27, 2016

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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Friday, November 25, 2016

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.
 
 
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