The Challenge of running a support group, restoring my passion

I left the Fatty Liver Disease Support Group I created 6 years ago on Monday after 2 senior administrators left and deleted me from their Facebook. I have known both for 3 or more years and i was friends with their family as well. I was told the drama in the group was my fault for not standing up for them clearly. That I am too lenient and I am too often allowing people to come to the right answers for themselves once they have been advised on things like not using supplements. That I am the reason for the dysfunction that happens in there

I want to be clear that I understand their viewpoint. When you are on the edge waiting for a transplant or you have had one there is a desperate need to demand that everyone else NEVER get to their stage of this disease. I agree completely with this, but my confidence has come from the fact that I am unaware of a single member who came in to the group with early stage fatty liver who has actually gotten worse with the advice given in here about eating natural foods and stopping the processed foods as much as possible. You are looking for a ratio of 90% natural and 10% processed.

I did a lot of soul searching on Monday and cried a ton of tears. I was blamed for drama on the weekend that i was not a part of, i did not witness but that i received 10 emails from angry members about how things happened with deletions and how it was handled.

The issue on the weekend was actually about a celebrity who is extremely controversial that some members wanted to see as a spokesperson and other members were dead set against him.

This had NOTHING to do with the disease and the group at the end of the day. Having someone famous talk about the disease would be helpful but they should be a little less offensive to a large portion of population.

I came to a decision that i would stop running the group if i was truly damaging it by being to kind. I even started accepting that after 6 years pouring my heart and soul into this group that maybe it was time to back away.

I received a large number of emails of support from within the group Monday and I am forever thankful to those that took the time to check in on me.

Tuesday morning I believe God intervened.

1.A local city politician asked to meet with me and have me help him because he has just been diagnosed with fatty liver disease. He respects this is a business for me and wants to pay me to teach his family how to read labels, how to determine what is a gmo veggie and which are not. How to start a small garden and how to conveniently start making meals from scratch.

Once i spoke to him i was energized with my passion for this disease and helping people again. The negative messaging about whether i am doing a good job or not seemed less important.

2. In the afternoon I received a tweet asking me what i wanted to ask for funding for from a group that helps create campaigns for crowd sourcing. I told them about my visions for raising awareness on fatty liver and they see it as a very worthwhile cause and they will help me get this going.

I rejoined my group on Tuesday I was clearly receiving messages from the universe that told me this is too important to back away from.

On Wednesday I was asked to speak at a women in progress lunch on avoiding fatty liver disease at the end of April and I will also be on a talk radio show in Toronto talking about fatty liver as well.

So while i am still quite hurt by the events of this, i lost a large number of friends because i try to look at all sides of a story before i make a decision. Each one who left and deleted me thought i was supporting the other side, when in fact i saw that they all had a point.

If you have gotten worse while you are in my group please let me know. If this is a common event I will reconsider my position again. I want to help not hurt people.

Please be kind to each other and please be even kinder to your liver

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Arbonne Body Care and Cosmetics – Fundraising for MetoWe Camp!

I have been lucky enough to try Arbonne products thanks to numerous amazing ladies I am connected with on social media. Arbonne® products are vegan-certified: their formulas are never tested on animals and do not contain animal-derived ingredients or animal by-products. Due to the growth in Metabolic disease and Non Alcoholic Fatty Liver Disease this is very important to me and to those I care for. The chemicals being added by other companies are hurting our bodies in a toxic world.

To read about the products go to http://www.arbonne.ca/products/index.asp

To read about the company go to https://www.arbonne.ca/company/manifesto.asp

Megan wants to attend A Social Innovation for Change Camp this summer. This camp offers an amazing leadership opportunity that will be able to help Megan bring back to our community through volunteer work and other humanitarian efforts. Megan will be working with industry professionals to help her learn ways to create tangible changes. To learn more about this camp go to Me to We’s website.

http://www.metowe.com/motivation-leadership/take-action-camp/ontario-take-action-academy/#social-innovation-for-change-fostering-creative-and-innovative-ideas-for-positive-social-influence

Megan is 16 years old and a junior at Sir Frederick Banting Secondary School The opportunity to attend this camp would mean the world to her as she looks towards a career in human rights law after fighting for 6 years with a chronic illness called Non Alcoholic Fatty Liver Disease that left me in various states of extreme sickness throughout that time. She has impressed Investor’s Group enough so that they have given her a bursary to  cover some of the costs, but with me as a single mother she need help to raise the remaining funds. Human Rights are a huge passion for her and she will  make a difference in both the local and international community.

Janet Auty-Carlisle is a great friend that I have not had the pleasure of meeting in person but I have known on Social Media for a good 5 years. Whenever there has been an opportunity to support Megan and I in that time she has always stepped up and been wonderful.

Now she is offering to give Megan a nice percentage of all sales in May for Arbonne products purchased online with Janet’s Sales ID.

So if you want to help Megan and you want to help your body by using non toxic products go to

https://www.arbonne.ca/shop_online/shopOnline.asp

Orders can be placed in North America, United Kingdom and Australia. You will need to enter the 9 digit id 115726215 to get the fundraising donation to Megan.

Thank you in advance from your liver and from Megan!

 

Baking Fundraising for Me to We Camp!

Megan Clermont described this perfectly I have adjusted slightly.

Do you like baked goods and helping out a good cause?

For the month of May my daughter will be baking a variety of home baked cookies, breads, and cupcakes with all proceeds going towards fees for a Me to We Take Action Camp this summer. Prices for these items range from $1-$7.50 with a total of $500 needed to be raised for the cost of attendance.

This camp offers an amazing leadership opportunity that will be able to help Megan bring back to our community through volunteer work and other humanitarian efforts. Megan will be working with industry professionals to help her learn ways to create tangible changes. To learn more about this camp go to Me to We’s website.

http://www.metowe.com/motivation-leadership/take-action-camp/ontario-take-action-academy/#social-innovation-for-change-fostering-creative-and-innovative-ideas-for-positive-social-influence

Megan is 16 years old and a junior at Sir Frederick Banting Secondary School The opportunity to attend this camp would mean the world to her as she looks towards a career in human rights law after fighting for 6 years with a chronic illness called Non Alcoholic Fatty Liver Disease that left me in various states of extreme sickness throughout that time. She has impressed Investor’s Group enough so that they have given her a bursary to  cover some of the costs, but with me as a single mother she need help to raise the remaining funds. Human Rights are a huge passion for her and she will  make a difference in both the local and international community.

If you live in the GTA of Toronto Ontario or Southwestern Ontario we would be happy to deliver the baked goods to you. Sadly we can’t do this beyond that geographical area.  There will be 2 days that deliveries will be made to the Toronto area. This offer is limited to the month of May 2013.

In order to support Megan in this amazing opportunity please go to the attached order form and fill out your information and order request and submit to have it sent to Megan.

https://adobeformscentral.com/?f=PbKTYKRgo2IZr23pmmLnIA

 

 

 

 

 

 

Marina’s Story – 14 Year old NAFLD patient

I met and started talking to Darlene who is Marina’s grandmother after she found my blogs about my daughter Megan. I have asked her to share the story of her grand daughter Marina.

It was Nov 1. 2012. Marina woke up for school and said her stomach hurt her. She generally never gets up at 5 am and for her to wake me up that early, I knew it must hurt her very badly because she is not a complainer.
She showed me where it hurt and it was like the top right side of her abdomen. She started getting ready for school and she was still in a lot of pain..so much so that I took her to the urgent care clinic instead of waiting to call her family doctor’s office. At the clinic ,they took Marina right back and drew blood, after examining her and with her being in so much pain, they reviewed the blood work wnich showed her (* white blood count was way off) they actually called an ambulance to transport her to Children’s Hospital.

When we got to the hospital…they hooked up an IV…started drawing blood and she was in so much pain she was crying. They did a CT scan and a Sonogram and took her right to the ICU. Her blood pressure sky rocketed..her blood count was way off…and she couldn’t stop crying about the pain. I was trying to act calm on the outside to keep Marina calm, but I was so worried …thinking…let this be her appendix so it will be solved quickly!

That would have been to good to be true. They call in the Gastroentologist and we were told the scan results were in and she had pancreaticitis. Marina just had to stay for a few days in the hospital …keeping a good eye on her in the ICU. No food to give her pancreas a rest with just an IV and lots of pain medication. So, I could breath again… she stopped crying cause the pain medications were working.They brought a portable toilet for her to pee in because she was hooked up to monitors.She was dealing with nausea but didn’t throw up…her blood pressure was high but they said it was due to the pain. To me, she looked so uncomfortable from the pain the whole thing,then she goes pee and what the heck her urine was brown like coffee. I almost passed out but I am still acting calm on the outside..she was groggy and I calmly asked the nurse why is her urine that color? Oh that’s ok, its just that her pancreas is inflamed and it needs to rest. Ok they are the medical experts… so for the next 24 hrs..she continued to feel nausea she was still getting the iv so she could let her pancreas rest, still urinating brown ,blood pressure high but a little lower with drugs,she did not sleep much and I didn’t sleep at all.

So 24 hrs go by and the doctors came in to make their rounds. I asked all kinds of questions…like what caused this what can be done why is her blood pressure so high…why is her urine so brown…they answered all my questions and said her pancreas got infected…they don’t know how…these things happen… no med for it just no food to rest it and the pee is brown because the pancreas and liver work together and the red blood cells are coming out in her urine because the liver is not working correctly because of the pancreas being swollen…its fine.

So two more days went by and she still was on pain medications but it was hurting less everyday…her blood pressure was returning to normal and her pee was a light brown….so they moved her to a regular room and had her start in liquids… they gave her soda POP…with sugar in it…coke, pepsi,ginger ale, they gave her pudding, ice cream, jello and these are medically trained doctors?. So I not knowing they were poisoning her liver, I was so happy Marina was holding it down. So after a day of sugar galore, her face started turning red,then purplish. Again I was calm on the outside falling apart on the inside. I Go and tell the nurse and they see her blood pressure rocket, her pain was coming back. They rush her back to the ICU. What’ going on?? I go to an empty room to call my daughter long distance to tell her help!. I was so weak inside my daughter (marinas aunt) and my son in law and my daughters best friend get on their computers they are searching reading, looking, talking, trying to save Marina.

I am sitting in marinas ICU room when a nurse…now this is extremely important to remember..THIS NURSE who was taking care of marina that shift…commented to me…who by the way NOT ONE DR. OR SPECIALIST SAID A WORD ABOUT to me…her liver enzymes are so high. So I freak out inside what? her liver enzymes are so high I am thinking no doctor or specialist said that to me!!! As far as they were concerned it was all only about her pancreas So now back home they start thinking maybe its not her pancreas maybe her liver is causing her pancreas to be sick!

Now keep that comment from my daughter’s friend in your mind along with what the nurse said about marinas enzymes
So I see my precious grand daughter is getting so sick again after she started getting better!

I go to the room where marina can’t hear the desperation in my voice and tell my daughter listen to this a nurse just said to me wow her liver enzymes are so high. I said why would she be concerned about that,all along the doctors and other nurses were saying to me…no its her pancreas, the other organs are just helping with her pancreas. So my daughter says mom let me talk to her doctor. And I took my phone and went and found Marina’s doctor and told her to please explain to my daughter about marinas health… 20 min the doctor hands me back the phone and my daughter says to me MOM..WHY ARE YOU TELLING US COMMENTS MADE BY A NURSE…GETTING EVERYONE WORRIED THAT MARINAS SO SICK..HER DOCTOR SAID HER LIVER IS FINE she just needs to rest her pancreas everything is fine!

so I am numb am half happy, half thinking no she is back in the ICU, I am in a mind set of total confusion. I’m thinking about what the nurse said and I have marinas mom stay with her and I went to a computer, typed in liver and Fructose in Google searched fructose, sugar, high fructose corn syrup, every thing I typed in about liver..dark urine pain. I start seeing all this about children…fructose ,liver, dark urine and I’m like what??. So I send all these links to to my family. My son-in-law said get Marina out of that hospital something is not right!

marina was so sick when she came here they didn’t put anything in her body meaning no sugar because they wanted her pancreas to rest and it was working her blood pressure went down her blood count was getting better her urine was lightening with every pee. Then since she was getting better they took her out of ICU and gave her all liquids and soft food high fructose pudding high sugar jello, sugar in chocolate milk The comment stood out in my mind….maybe its her liver that’s making her pancreas sick I said I am taking her home…The doctors said you can’t, no said marinas mom! I said OH YES I CAN I AM HER LEGAL GUARDIAN I took her home and put her on a strict no sugar diet and my family and I read everything about fructose sugar liver and by the next week when they did blood work…wow….was her body getting better not much pain at all pee turning yellow not brown no nausea, sleeping good Since then we have been very on top of marina walking for exercise..every day she has to walk… he set her up with drinking watered down cider vinegar every other day….and on the other days she drinks a spice with water… turmeric. Every label is now read for hidden ways of saying sugar!

Marina is an honor role student and is doing very well since we took her health into our own hands! Doctors are not taught enough about this disease and they don’t look for it and assume its other things. We blindly trust doctors with our lives and sometimes you just need to listen to common sense. If the sugar brought all symptoms back then there is something to consider getting rid of for your body!

This disease is hitting kids as young as 2.

Do not ignore it, if 1 in 3 north Americans has liver disease someone you love is dealing with it before it starts showing nasty symptoms like this.

Join our group on facebook https://www.facebook.com/groups/fattyliversupport/

Follow us on Twitter @fattyliverhelp

And join our website with patients helping patients at http://www.reversefattyliverdisease.com/

Easter Food Drive Challenge to You!

I sent the following email to my company today and I challenge you to do the same in your business:

A reminder that I would love to see us make an effort to focus on bringing in healthy foods for the food bank this Easter. The patrons at the food bank are at extremely high risk of chronic illness due to the chemicals and additives in processed foods. Sadly processed foods are also much cheaper for them to buy on their own and most of what is given to them at the Food Bank. I would suggest the following foods for our contributions.

.

Gluten Free packaged items. – Generally they are lower in chemicals and you can understand the ingredient list.

Organic

PC Blue Menu items

Low or No sodium chicken, Beef, Vegetable broth

Brown Rice Pasta

Whole wheat Pasta

Brown Rice

Organic peanut butter

Unsalted almonds, Pecans, Walnuts

Green  and Herbal Teas

Organic Pancake mix

Flax Seed

 Ensure that items do NOT contain Glucose/Fructose. This is now proven to be a dangerous addiction in our society and many manufacturers are putting it into products that you would never expect to find it.  It is proven to be contributing factor to Metabolic Syndrome which causes Insulin resistance and leads to diabetes, Fatty Liver Disease, Heart Disease, Kidney disease, Thyroid Disease, and Poly cystic Ovarian Syndrome. Currently these disease are impacting 1 in 3 north Americans and it is not only obese citizens being crippled with chronic illness.

I know of 2 men in their 30’s who died in December due to Fatty Liver disease. My own daughter was diagnosed with Fatty Liver Disease in 2008 and it is impacting kids as young as 2. Women who have this damage to their liver are advised by their doctors not to get pregnant, this can cause your baby to be born with the disease, you actually run the risk of Acute Fatty Liver disease in last trimester which could kill the mother and the baby.

The issue is serious and the lower the amount families spend on groceries the more they have to rely on cheap processed foods. I know a single dad who can only spend 100 a month on groceries for him and his 2.5 year old daughter. I am helping him to figure out ways to improve the groceries that he is buying for them but at 25 a week that is not easy to do.  I personally spend 100 a week for my daughter and I. Even we get stuck buying some of the cheaper items when things are tight

If we start here, I hope to build this momentum and get more in the business community to start donating the right foods.

My Daughter my Angel Megan

My amazing daughter Megan continues to make me realize how very special she is and that I must have done something right with her.

In 2010 Megan was in a wheelchair due to extreme vertigo. this was in addition to extreme menstrual bleeding and the impact of Non Alcoholic Fatty Liver Disease. This would be a great reason to feel sorry for yourself and of course she had lots of moments of that! She was 13 years old and wanted desperately to walk for her Grade 8 graduation and to be at school with her friends in this special year.

Megan completely surprised me when she mentioned that she wanted to donate her hair for kids with cancer. Since Megan was a little girl hairdressers have marvelled at her hair colour with gold, brown, red, blond strands. Her hair is thick and beautiful naturally and Megan knew that if a sick kid was losing her hair in radiation treatments, that that sick kid might smile when she was given a wig made out of megans hair.

That Megan could see that other kids were sicker than her, that she could empathize that losing hair would be devastating to a little girl made my soul sing.

I did something right with my kids. I have always empathized with others who were struggling more than I was. In fact remembering others have things worse than me is a core value I hold dear. It keeps me from hitting bottom. You can always find someone who has it worse that you do!

I had that reinforced on Saturday when Megan once again chose to cut off 10 inches of her beautiful hair to donate to kids with cancer.

Megan now has a cute Bob haircut , its sassy and fun! I chose to go for a short hair cut to help Megan with the “I don’t want to look like my mother stage!” I have had short hair many times and I like it! As a matter of fact now that we are starting to go to the gym I know that the short hair will make that easier too!

Megan might not grow it out again right away, but I know in my heart she is not done giving! 

I won! I WON!

Yes today I was listening to the radio at work. Low volume with a headset to ensure i do not disturb anyone else, I heard the prompt to try calling in for a contest and things were quiet so I picked up my cell phone and started dialing. You never really expect the phone to ring at the other end…you absolutely have no confidence that if it rings you would be the caller that they were looking for! So many attempts over the years , so many busy signals, so many wrong caller!

Today it was my turn. CHFI 98.1 in Toronto runs a Big Bag of Cash contest. You open bags of cash that can have up to 10,000 dollars in them…there is always a bag that has an alarm and if you get that alarm your game is over and you don’t win any money.

I have heard people do this contest on this station for 2 years. I remember my own blood pressure rising listening to people taking a chance on opening one more bag of cash….me screaming at the radio DONT DO IT~!!! hearing the devastation when they lost money by taking too much of a risk!

Then there are the other callers who take those risks and keep going and going and going I have heard someone do 10 bags and it nearly killed me…I think they got a few thousand dollars but I knew I would never take that much risk!

I am a single mother that scrapes by paycheck to paycheck. Last night i was truly stressed out because I am the maid of honour in a wedding for my friend Kirsten in 6 weeks and I had to come up with about 400.00 to cover expenses related to dress, makeup, hair and shoes for that event, I should also get them a gift and there is the shower and bachelorette party to arrange. I was pondering how on earth i was going to be able to do this for her. I didn’t consider a year ago when she asked me to be maid of honour all of the financial obligations that role entailed. I certainly do not have that spare money sitting in a bank account anywhere.

So I picked up that phone and i tried calling…it was a busy signal for 3 or 4 of my calls when all of a sudden it rang. I took the phone away from my ear I could not believe it was actually ringing? Had I called the wrong number? Nope it was the right number…The DJ picked up the line and I expected her to say sorry you are caller 14….but instead…she said hi there what is your name? I tentatively told her Michelle. and she said well congrats michelle you are caller 15!

HOLY CRAP! I was the right caller, I was going to have my chance to open the bags of cash. I knew that I needed the money desperately to cover the wedding expenses and knew I needed over 500.00

My first bag had 300 dollars in it, I was very confident and said go ahead and open bag number 2

The second bag had 500.00 in it….I hmmed for a second and decided to risk one more bag…

The third bag had 650.00…I yelled stop! thats it and thats all I need!

650.00 will cover my wedding expenses and allow me to breath a little easier!

Of course they torture you by making you listen to how much you could have won…

The game ended at Bag 6 with 1200.00 in it. I am very happy with my 650.00 winfall and its 650.00 I did not have that this morning and I can happily be part of this wedding without having to beg borrow or rob a bank!

My heart did not calm down for about 30 minutes….I called my daughter and she was so happy!! I updated my facebook and my friends are all thrilled for me!!

I will sleep easily tonight knowing I am a WINNER! Take that Charlie Sheen!