Guest Post: Euthanasia and Disability Rights

Monique and I both live in Ontario, Canada, where there are new discussions happening both provincially and federally regarding “assisted suicide”, “death with dignity”, the right to die, and euthanasia (I may have missed a few other terms used).

We both have MCS/ES, and are confronted with systemic discrimination and barriers to access with almost every breath we take. Breathing is not optional. And we are not alone. There are hundreds of thousands of us in Canada, and millions around the world.

Open letter in support of Euthanasia and Rights for those with diseases that defy accommodations

Guest Post by Monique

I Am Easy to Ignore

I am female
I am over 60
I am divorced and alone
I am a student
I have lower employability
I have invisible disability
I was abused
I have depression + ADD.
I do not feel strong

The biggest and most painful ordeal is people who lack the ability to reduce the perfumes they wear in public… who value their vanity above the good of others. I cannot exist without the kindness of strangers. I do not want to live without my Right to life-sustaining air. I do not want to explain why I cannot breathe your scents and subsist in the lifestyle you value and have grown attached to. I cannot live in your chemical soup.

I am a canary. I have MCS. Although canaries have saved many from disasters, their deaths are never celebrated. I feel like I will soon be sacrificed so that many will continue to breathe good quality air.

I would like to give a voice to those canaries. I’d like to call upon every canary on this planet to stand up and be counted. I want every canary not to die in vain.

I want every canary to die with dignity. I want every canary to have the right to euthanasia.

Because scents and chemicals are valued more than people’s lives, we have no rights. As of August 22, 2015, AODA does not guarantee our rights to a chemical/scent-free environment needed to live in either our private or public lives.

I have been unable to maintain employment, or be successful in pursuing an education because even though I paid for my education, my school could not support me in my need to study “scent-free”. And as of this moment I am only 94 hours short of graduating but I’ve been told to stay away because they are afraid of a mask I need to wear that allows me to breathe scented soaps I need to use on those I care for.

I was supposed to graduate with my class next week.

I was supposed to graduate with my daughter at the end of the month.

Instead, I wait for a decision that will be made without even speaking with me directly. A decision was to be made yesterday. I still have not heard from anyone. The Canary who does no harm to others will suffer her fate in silence like a caged animal. Living at the mercy of others because I have no rights.

Not even the right to die a dignified death.

To live without Rights is cruel. At best, I want the same rights animals have in Canada. The right to have someone kind overseeing my fate.

Today, people who need Long Term Care in Ontario must go through a government regulated agency, CCAC, to enter any regulated home. Even though CCAC gives you the choice of 5 homes, 5 may not be accessible to me due to lack of willingness of homes to offer scent-free products and air I need to enter a facility. They are not “obligated” to provide this quality but MAY DO SO….

This leaves me and about 300,000 or so other canaries with little hope in the future.

We know too well the harassment and abuse we have suffered at a system unwilling to show mercy to the few of us who have been judged as fussy or irritating or marginal.

Silent no more? Do you see a parallel? Just because this is not happening to you, does not mean this does not exist.

I beg you legalize euthanasia and make it easier to access than the rights I currently have to live and work with dignity.

These are so many in Canada who need to be given the kind of mercy we give to our companion animals when there is no hope for recovery and living a less than comfortable and pain-free life. As anyone with the kind of power to show this mercy, please understand the pain we are going through. You need to put yourselves in our shoes. We need your empathy because you have not been able to offer an alternative.

⇐♥⇒

This is my take, very simplified:

We live in a world where tax cuts and corporate profits have become more important than life itself.

die with dignity 1

.

What are your thoughts? Have you faced systemic discrimination? Are you able to access the services and supports you need to live with dignity?

Please share.

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40 responses to “Guest Post: Euthanasia and Disability Rights

  1. I feel and understand what you are going through. I have shared your post.
    You are in my prayers.
    love and hugs
    deborah

  2. I follow your emails and I more than understand all the issues that you bring up . I have had MCC for the last twenty year with horrible results from the medical community which I now understand there is no help for me. I have a beautiful family and a strong support system but I am unable to leave the the house if there is any toxins such as cars ect., and all food has to scrubbed to ensure that the less amount of chemicals are going into our food. Sounds crazy, this is the way that I have to live. I when from a very active high paying position in a university to disability payments of below poverty level. This is the only site that seems to understand what I am living with, it would be wonderful if you could reply so I could see if there are other people like me out there. With regards, Nancy P. Donovan

    • You are not alone Nancy, you are not alone.

      And our numbers are growing even though people and children are not being properly diagnosed.

      MCS/ES and so many other chronic, disabling health conditions are completely preventable, but we’d require an economy that prioritizes life, not polluting for profits no matter what the externalized costs.

      People don’t want to believe how much they have been lied to, and how many harmful products they are using… They want to believe there is someone protecting them… These are hard beliefs to change, and it seems require some devastatingly serious personal experiences with big heaping doses of love to be able to handle the truth.

      Love and kindness can save us all… not fear, not hatred, not assisted suicide, but love…

      If we all loved, we would not be destroying the planet that sustains our lives, we would not be treating people as if they were expendable…

    • Sadly, you are joined by millions of others who understand your pain and frustration. I am one. I am disabled with multiple chemical sensitivities. Happily, I can assure you that that there are many bloggers willing to offer love and support. ❤ I am one.

    • You are not alone. I was a nurse 20 yrs ago when i started reacting to chemicals. I went to Allergy Ass. Of LaCrosse WI and saw Dr. Kroker (real name no kidding) for many years. By treating me with drops under the tongue he was able to get my food and mold reactions under some control. I still have anaphlatic shock to Avon personal care products and Purell.
      You are lucky to have family, mine gave up on me 10 years ago.
      Where do you live?

  3. nothingwillbehidden

    A good red I’ve been on that road long time now. Heart is of great concern now as organs have begun to fail..ANY INFO ON COLD ALLERGY.Thank you and be well.

    Irene Carlson

  4. Dear Monique,

    From my perspective, I can clearly see that you have made a discouraged and false assumption about your present, undeniably harsh, circumstances when you say “when there is no hope for recovery” and you “have no rights”. Do you not know that we, as canaries, have each received a personally deigned challenge that is in our paths and all 300,000 of us canaries need to overcome them by becoming stronger, each in our individual ways?

    The mind is an extremely powerful tool and we need to take command and demand it to empower the body to make a recovery, when doctors of medicine say that it is not possible.

    When you say that there is no easy path, it is time to take an imaginary machete and break through the barriers.

    Create hope where none before existed.

    With my MCS, I came back from many incidents.

    One was where the tenant in the apartment next to mine, living in an older house with a mutual hallway, used carpet cleaner right outside our doors, and when she vacuumed, the fumes almost killed me, The contaminated air came right into my apartment through the crack at the bottom of the door. It was three days before I dared to open my door and I had no fire escape.

    Dianne

    • I wish I knew how to respond to this, maybe it will come to me later.

      • To people who don’t know, Dianne is one of a very small group of people who stepped up to help me when I needed PRACTICAL help in Toronto, despite having EHS and living in precarious circumstances herself.
        Among other things, she went to the organic farmers market by bicycle when I needed food and there wasn’t anyone else to shop for me, she found roof racks for my Tercel when I had to get out of town and couldn’t fit things I needed into the car, spent who knows how many hours trying to find me the practical supports I needed to survive.
        She is one of the very few people who kept me alive when it didn’t look as if I would survive my circumstances.
        I may not agree with her about everything, but I love her dearly.
        ((( ❤ )))

        • ((( ❤ ))) back to you Linda. You were the most helpful teacher for me at the time we were well connected. I learned about MCS and how to cope from you.

          Previously, another of my perils was that the 'Smart' meters activation almost took my life. It took many years of hard work to regain the level of functioning I enjoy today.

          We each make the best, responsible choices we can in the moment, and friends have to respect boundaries, sit back and allow others to find their own ways, even though we wish it was not as hard for them, offer help when possible and be really happy when it all turns out well.

  5. Very spiritually advanced people have learned how to activate more of our DNA than the average person. I know one person who is well over 50%.
    Please see: ‘DNA’97 Percent of Our DNA Has a Higher Purpose And Is Not ‘Junk’ As Labeled By Scientists’
    http://preventdisease.com/news/12/091112_97-Percent-of-Our-DNA-Has-a-Higher-Purpose-And-Is-Not-Junk-As-Labeled-By-Scientists.shtml

  6. i have wrestled with a reply for a few hours now. I have chosen not to address the legal right to do what we choose with our own bodies. I have no medical experience or training in therapy so I cannot offer advice on the topics euthanasia or depression. In my journey with a disability with MCS — I have found I get depressed for two separate reasons: an actual chemical reaction from certain toxic chemicals (which I cannot name because they have not been disclosed to me) and the I’m-isolated-and-in-pain-and-have-lost-things-that I-don’t-deserve-to-have-lost depression. The first depression can be scary but after riding it out a few times — I at least know when my body has detoxed the chemicals — my depression will lift. The second depression I look to the physicist Stephen Hawkings. He has lost almost all use of his body and yet he has continued to contribute to the betterment of the world. I certainly when I was first disabled went to the levels of grief: denial and anger …. but I eventually started to look at the gifts that came out of my disability. I found a love for nature photography. I got rid of a lot of toxic people from my life. I started a blog and met many people around the world. I’ve helped educate people so that they can make a choice about the toxic chemicals they bring into their homes. I guess to me when there seems to be no hope left that is when I rely on my faith. I have faith that we canaries may sometimes feel very small and insignificant but our voices ring true and truth always wins out even if sometimes it takes longer then we hoped. So my request to all canaries out there — seek whatever help you need to — to lift your depression — because the rest of us need you to sing your truth to all those who fight to make us invisible. ❤

    • Our support groups are indeed lifesavers in this way. We inspire each other and share ways we can still be contributing to others, even if housebound.

      It is the people who cannot access internet to find support, who cannot access safe housing to ride out the effects of exposures, so they are constantly in a state of exposure, the people who have no pension or disability benefits, or insufficient ones that don’t cover the cost of safer housing and assistive devices…

      Stephen Hawkins is often held up as an inspiration, but if he was alone in a room with no support, how long do you think he’d last? If he didn’t have people around him fighting to get him the assistive devices and support he needs? If he needed fragrance free diapers and support workers and cleaning, non-toxic wheelchairs and electronic devices… we might actually see a change globally, but until someone with that kind of support gets MCS/ES and comes out of the closet with it, most people with severe or inconvenient disabilities are still seen as disposable by society, who would rather have tax cuts than pay for the social programs that would help those who are not in financially secure, supportive families.

      • Certainly, I cannot argue with what you say. If we look at history at least in the US — there has always been at least one group that has been suppressed and discriminated against — welcome to the Land of the Free. People of color have had to fight for their rights as have women and Native Americans. People have had to fight for their rights to have wheelchair accessibility. Groups classifying themselves other than heterosexuals have had to fight for their rights. The shift I would like to see happen is that NO human is disposable or invisible. Every human has a right to clean air and water and food and a decent income as well as other basic human rights. You are correct — if a famous person came out of the closet to speak out about the issue of chemical toxicity — things would probably move quicker toward stopping humans being used as lab rats for profit. Until then — keep writing and posting and sharing thought-provoking posts like this one. You never know that famous influential person may just read it and get the word out to millions with one keystroke.

    • Colleen, I think you would really appreciate this interview about an upcoming book:
      http://cbsloc.al/1STS1m7

  7. ❤ Yes, good for you Colleen. Keep up the really difficult, hard work. It's easy to lose focus and get distracted from one's Divine Purpose.

  8. The answer that I have been taught by an advanced spiritual master about whether it is a choice about our level of spiritual awareness and the “suffering each is forced to endure at the hands of others” is that our souls agreed to take on a certain difficult challenge that we each agreed to, in order to accomplish something significant for the betterment of Humanity, the Planet and our Creatures during our lifetimes here.

    Personally, when I am on track, I have an inner, knowing feeling of purposefulness being fulfilled, and my burdens are being lifted just a little bit. These tiny increases in wellness add up, day after day, so that in a couple of years, even though set-backs, sometimes major ones, do interfere temporarily, overall, things get far better than where they were.

  9. I demand the legal right to do what we choose with our own bodies. providing it is a valid choice. Discouragement and lack of knowledge of what to do can be a horrific mask if acted upon incorrectly.

    I wish that whenever someone could gain some functioning, while being supported with natural methods, according to our Laws of Life of how the body, mind and spirit work together, has the opportunity fairly presented, without interference, and the material means to achieve the desired success is provided.

    Only after a fair test, to see if pain diminishes and the body heals, only then, it is appropriate to allow “assisted suicide”, “death with dignity”, giving the right to die and euthanasia, providing that is is done without interference from drugs to permit the soul to cross over easily.

    This past spring I heard of a case of a soul crossing where there was so much abuse and neglect in life, with a woman being controlled by a daughter who had power of attorney, that the previously deceased husband reached over and pulled his beloved wife to him. The wife’s body took 3 days to gradually shut down and die after the soul had left. “Death with dignity” was provided without doctors and family understanding what happened..

  10. I’ve read everyone’s comments here and in other forums on this matter and feel both sides make valid and noble points. However, I would not want anyone for ANY reason denying me a dignified and certain death if I so choose. I don’t care what noble thoughts one might have, it seems very wrong to impose your will upon someone else. If one thinks they can love someone else’s existence better that person who has been “living” it, than I say go ahead and have that life. Do your best and enjoy it’s challenges. Just one catch, you must exchange with your apparently more bearable existence first.

  11. What if everyone knew they would be cared for, appropriately, no matter what the illness or disability?

    • Yes, that is it in a nutshell. Everyone on the Planet, with or without any illness and/or disabilities is entitled to have all the best possible care of clean air, the most nutritious food and pure energized water, and all it takes to provide for all the factors life. Then allow Nature to take it’s course to self-heal the body, mind and spirit to whatever extent is possible. Only afterwards, if the body is not able to repair damages, living in endless pain and suffering, then open other options.

  12. What if we all had access to what we need to live with dignity?

    • Finalexitnetwork .org has just been fined $30,000 yesterday for their involvement in Doreen Dunns suicide in her Apple Vally MN home in 2007. The 2 FEN members that were present will face trial in the future.
      After seeing a man jump off the High Bridge in my city a woman started a petition on change.org to post a suicide hotline number. KSTP-TV aired an interview with her. The piece begins with a pic of the bridge and the info that a 16 year old jumped last week. The powers that be have not reported on suicides for fear that it would encourage it. I dont agree, it i always better to be open and discuss issues. As a nurse I remember most of the people I helped including family on hospice. I do not remember anything after I was revied, I have a DNR order now. I don’t believe in keeping people alive at all costs. No one knows what happens to us when we die. No one. No one can know what another person is going through or feeling. No one can judge me for not being on a higher plane than theirs. I am not lacking because I do not believe in god. Most of my family and friends are dead. Do i think I will see them when i die , no. I am childless, have no family I am close to, if i get cancer I wont treat it. I leave my home for only a few hours a week for years now. Keeping me alive are my dogs and the mission of getting harmful chemicals off the market. I want everything that has chemicals in it to have a poison symbol on it or a warning label. I will sue my city to get them to go fragfree. If i ever get the no letter after 6 months of waiting for the response. The only way MCSers will get rights to clean air is by litigation. I hope I Have the strength to do it. I am rambling, my brain is done for today. Please send a letter of reasonable accomadations of fragfree to the city you live in. If we all do it maybe just maybe they will listen. I have tried editing this this but im too tired.

  13. I think even if you knew you’d be cared for with 100% dignity and would everything you would need to keep you alive, there are cases where many would still prefer euthanasia. I couldn’t in good conscience stand in their way. Unfortunately, not many have the support and the money required to afford it.

    • I think it’s wrong to promote assisted suicide before making sure everyone has access to the support and care that is needed to live in dignity.

      The time and energy could go to promoting adequate resources for life, instead of more for death. Our economy is based on systems that promote fear and destruction instead of life. No wonder some people want to die.

      I really believe that if we as a society valued life more than money, people would not be wanting to die.

  14. Agreed Linda! It takes some time, perhaps months, even years, to be able to allow one’s thoughts to change for the better, and for the mind to adjust to the fact that a new economy will arrive, where every life has the utmost value and the most suitable care will be provided to maximize each one’s potential.

  15. I’ve been able to access services with dignity, however the stress from having to be so damn assertive, persuading people, acting polite and calm when I feel angry and agitated has taken its toll. I can no longer do it. It’s too hard; between the fear and apprehension I feel leading up to all these conversations, to the neglect, abandonment and hurt I feel when rejected by other humans who won’t, can’t, begrudge ‘allowing’ me clean air to breathe. It’s a nightmare I can’t wake up from. Being assertive, and demanding the right to breathe is a recipe for damaging relationships. Fragrance is SO important to people.

    I think about getting old and how I have nowhere I can go. I can’t have anyone come into my home, and the one person who does, well, what if I lose them? I can’t drive my car. I can’t go for walks because I keep getting sick. The state of my health hinges on a safe home. If I can get that, will it end there?

    There is a doctor in Australia who wrote a book about how to do this, however, it’s illegal here to do that but, of course, old people do it anyway. But he explains all the ways it can be done. Ergo, it’s not with dignity to do it like that if it’s illegal. If we all go and bloody kill ourselves who are they going to sell all those supplements and pharmaceutical to?

    This is the first I’ve read about this topic in regards to MCS but i often think about it. But then there’s my dog and my rabbits; but I have to wonder about their quality of life because I can’t give them the attention they deserve.

    Since our PM Tony Abbott became prime minister, I feel like we are all doomed over here. The almighty dollar rules. Climate change is a ‘myth’ and doesn’t get the attention it desperately deserves; and I feel like we are the only ones who make the connection between global warming and MCS.

    Tired, really tired of it all. Sorry, think i need to go lay down now.

    • It is tiring, very tiring, and requires so much extra time, energy, and bandwidth at times we have little if any functional energy to begin with, and then the discouragement recovery time too, when we are so consistently denied safe access to anything and everything, when even safe toilet paper (as you have written about) is an exercise that can make us crazy if we stop to think about it…

      It’s very discouraging, that our society thinks assisted suicide is a better idea than making sure all people have all the supports (and that includes clean air for example) to live healthy and be included instead of forced into isolation without proper medical or social supports…

      What makes it harder is not enough people seem to care… or the problems become so complex that it takes a team to solve them… and most who do care live far away, in our computers, isolated in their own realms of attempted survival… so cannot do anything practical to help us…

      EXCEPT TO GET THE WORD OUT THAT ALTHOUGH WE ARE MADE INVISIBLE, WE DO EXIST AND WE DON’T WANT TO BE FORCED TO WANT TO DIE FOR LACK OF SAFE AIR TO BREATHE, CLEAN WATER TO DRINK, AND NON-TOXIC FOOD TO EAT!!! (non-toxic clothing, housing, medical/dental services, and people are also needed)

      When I was in Toronto, it was my cats who kept me alive, I would have done something with the gas lines otherwise… I dragged myself out of bed to feed them and clean their litter box… and then sat at the computer, playing free cell (solitaire) for months and months, because I was seldom able to string a sentence together, it took too much effort to get the context, and people misinterpreted so much of what I said and what they thought I was capable of doing… when I could put a sentence together or remember a website that had helpful information. Playing solitaire and free cell helped my visual memory… stopped my brain from complete atrophy…

      At the cabin, there was the possibility of a one way walk to the lake, even in winter, as a neighbour had a heated water hose for their all year water pump so the ice was melted around it and offered a way under water.

      I keep wishing, hoping, and praying for a change, for someone influential enough to be able to create some safe communities for those of us who need them, and to get the damn toxic corporations to STOP poisoning us all!

      I can’t believe the people in charge of those corporations don’t know their own children and grandchildren are also at risk. I don’t know how they think they can escape the consequences, because we can’t make clean air and water or food… only mother earth, or mother nature can do that… our filtering products only go so far, and pharmaceutical neutraceuticals will never be able to provide us with all the nutrients a living body needs to survive.

      I hope you can finish up your safe build soon, find the health supports you need to build up what you can, and that the rest of the world wakes up and stops buying and using those corporate poisons and toxic products.

  16. Sadly I have been told ‘only the strong will survive’, so it seems that those others that prefer to ignore us canaries do not see us as a warning of the devastating effects of this toxic society but just as ‘weak’, lazy, complainers. I guess they figure themselves and their own children to be the ‘strong ones’ that will survive.

    There are those canaries with economical support to survive in dignity but it’s those who suffer, with no support , that seem to be the true canaries. It really comes down to that, we can keep living a dignified life with support, understanding and some TLC, but those who need this support yet can’t get it or afford it are doomed to a continual suffering on all levels which makes living hell.
    Life will not survive in this toxic environment that has been inadvertantly imposed upon us : (

    Hoping for a New World♡♡♡
    God bless you all♡♡♡

    • Even the “strong” are being epigenetically altered and as our bodies were not designed to be polluted at the levels we now see, even if someone is able to do everything as non-toxic as is possible now, our air, water, soil, and food have been so polluted, as have the supply chains for everything conceivable, that it’s only a matter of time… What kind of a planet will they have? One that the life has been sucked out of? It won’t support them, and humans arent’ capable of replicating mother nature. We cannot make air, water, and food from nothing…

      The constant states of suffering some of us canaries have to endure are I think unlike any other states of suffering, as they can be completely unpredictable and severe… much like living in an area with constant earthquakes and aftershocks and only polluted foods and beverages available in the rubble…

      Meh… too depressing, isn’t it?

      Another world IS possible! But people have to realize what is happening, and somehow find the strength to want to make it stop before their children and grandchildren are affected. It’s going to take most hands on deck to repair the damage that has been inflicted on this life supporting planet and our DNA and epigenetics…

      Hope we have that transformative breakthrough soon! ❤

  17. I had another kidney stone few days ago it got stuck in the tube going to my bladder. I was in horrible pain and had to call the medics. They were fragfree for the 1th time! The alert on the 911 system worked and they knew about me before they came in the house. All the work, all my letters to the city are working. Finally! A law school may take my case againt my city. I hope to hear from them soon.
    I had one nurse that has MCS, she didnt know so many other people had it. I gave her my email, sure hope she contacts me. They put me out to get the stone out, very scary. Everyone was much more open to being fragfree, this system is fragfree because i worked for it and years ago asked them to be. I gave everyone a pamphlet and the MD remembered me. I also have an order for a reverse flow room now so i dont have to worry about someone in the hallway visiting with some poision on. They were all taken so i didnt stay. Went home with a friend. i think they only have 4 rooms like that. Now if i can just figure out why my left kidney thinks i needs to make these stones……

    • So good to hear that some medical care-givers have responded that way!!!!
      I wish I had the energy to work on a few here.
      By the time most of us realize what is going on, and the systemic implications, we often don’t have the energy to keep advocating, but need advocates, when there aren’t any…

      So, to you, a BIG THANK YOU Nancy!!!
      May you and your kidney receive what it needs to process things without them turning to stone!

  18. “The Panel also heard that some solutions, such as disability supports and other social programs and services, can come from outside the healthcare system. As stated by David Baker, a disability rights lawyer: “”[d]isabled people and terminally ill people need to have access to independent living and the full range of support services. Choices about death should not be made because life has been made unbearable through a lack of choices and control.”” The expectation is that supports for daily living help ease suffering. Richard Elliott summarized these considerations:

    We need to make sure that people actually have adequate basic income and housing. … [W]e need a national housing strategy, we need a guaranteed annual income, we need proper universal health care, including pharmacare and access to palliative care. … All of our choices in life are constrained by our circumstances. It doesn’t mean we lose all of our autonomy, but we’re not all 100 percent autonomous, completely unfettered by the circumstances … in which we live. To the extent possible, we should be doing what we can … as a matter of social justice and of human rights, to ensure that people have as much autonomy as possible in making those decisions so that their autonomy is not constrained by poverty, is not constrained by homelessness, is not constrained by the fact that they don’t have access to the medicines they need to alleviate pain, prevent suffering, … treat conditions that can be treated, and that their autonomous decision about ending life, for example, is not being driven by the fact that they don’t have access to adequate palliative care. … So I think it would be really important for this Panel to come back and give to the government some considered views not just about specific parameters for when you might get assistance with dying, but the other things that the government should be doing and should have been doing really from the beginning, which is to adequately fund a health system, including palliative care, including universal pharmacare [and] basic minimum social conditions for life that actually mean that people live with dignity. That’s ultimately the underlying structural issue that needs to be addressed here. And the specific parameters about getting assistance in dying [are] really against that larger backdrop. So let’s make that backdrop better. The two really need to go hand-in-hand.”

    http://www.justice.gc.ca/eng/rp-pr/other-autre/pad-amm/p9.html#c14b

    http://www.justice.gc.ca/eng/rp-pr/other-autre/pad-amm/index.html

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