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

Advertisements

Coconut Oil to help your liver!

I have seen people posting about oil pulling for months maybe even years… I rolled my eyes and thought OK that’s just weird!  This week however another blog post got my attention.

http://www.fashionlush.com/wtf-is-oil-pulling-why-im-hooked/

She made it sound like a simple part of her day. She explained it well enough that i thought Hey that is something I could do!

I posted this on my Facebook and all of a sudden a bunch of them started posting that blog and trying the oil pulling.

I have been admiring posts about coconut for a while. My last experience with coconut before this was in 2006 when i went on a first date to a Thai restaurant and had coconut rice. That night when I got home i was covered in hives from head to toe! So I have avoided coconut since then.

I remembered that allergies tend to run in 7 year cycles so last Tuesday i put a bit on my tongue, a bit on my chin and a bit on my arm . I waited for 4 hours and nothing happened so I went ahead and decided to try the oil pulling. It certainly helped that I had friends trying it at the same time as me!

For my first experience with coconut oil pulling , i put the jar under hot water to allow some oil to melt on the surface. I put a teaspoon in my mouth.  I swished it around and initially it felt so weird. I could feel grains of my dinner being mixed into the oil in my mouth.  I lasted 7 minutes and spit it out in the sink. now my mouth felt really clean, my teeth actually looked quite shiny!  Now I admit I spit that out into my sink without thinking, you are not supposed to allow it in your drains because it will harden and cause blockages.

My second day i used a bit more coconut oil almost a full tablespoon, and I was able to swish it in my mouth for 15 minutes. This time i didn’t do it right after I ate so there was not the same level of grit in the oil in my mouth. I do suggest not eating for an hour before you do this. The feeling of the grit from meals in the oil is not good :(.

This time i spit it into a baggie. Then i took a sip of my water and swished that around and spit that out too. This is all i feel is needed at that point, you just want to make sure the oil is cleared from your mouth.  I noticed that my lips seemed softer after I did the oil pulling. So i took some coconut oil and applied as a chapstick, i also decided to put some on my forehead where there was dry skin. I honestly feel like covering my whole body in coconut oil now that I know all the benefits.

So what about your liver health. How does this coconut oil pulling help my liver. The basic reason for doing the oil pulling is to remove toxins from your mouth, you breath in toxins, you eat toxins, those are in your mouth. this allows you to capture the toxins in your mouth and avoid sending them to your liver! this is good news for your liver because you did some of its work.

Good fat – The oil from coconuts are made up of Medium Chain Triglycerides or MCT. Basically, they are smaller fats that are more easily used by your body. Most fats are Long Chain Triglycerides and are harder to digest. MCTs in coconut oil do not require bile during digestion which helps the liver.  The MCTs are absorbed quickly as a source of energy which is a problem in liver disease.

You can use this as a healthy oil for cooking stir fry or any other things you fry.

You can put it in your coffee or tea its a slightly sweet oil so give it a shot.

You can use it on your skin to sooth it after a sunburn, and to address the itching that comes along with liver disease.

You can use it as a natural underarm deodorant and avoid the toxic crap they sell in stores!

Its a great conditioner for your hair

There are tons of blogs with lots of amazing uses for coconut oil and  I now have every intention of learning as much as i can.

I am now a believer and I encourage you to do your own investigation and then try for yourself.

Everything in Moderation  With End Stage Liver Disease, or any stage of cirrhosis, it is best to talk to your doctor about what is best for you.

If you have Hepatic Encephalopathy : Talk to your doctor about how it may effect your insulin needs. Coconut oil does produce ketones, and is a quick delivery to your liver.  The key word here is moderation.

 

Be Gentle to your liver !

Michelle

https://www.facebook.com/groups/fattyliversupport/

 

 

 

 

Another Fatty Liver Death, Get Tested, Find Support!

One of my Fatty Liver Disease group members sadly shared that her good friend’s brother Dan had died from NASH last week. Dan did not find out he had the disease until he went to hospital in December after thinking he was experiencing a stroke. Once he got into hospital they discovered it was extremely advanced Fatty Liver Disease.  Dan spent December – February in hospital with no hope of recovery. He died within 2 months of learning of the disease.

This chills me at a number of levels. Firstly….EVERYONE needs to have a yearly physical. I know there are a ton of people who hate going to the doctor, I am even one of them. BUT yearly you need to demand that you are given a blood test and that liver panel tests are done. IF you find this disease early YOU CAN REVERSE IT. Doctors DO not know why this disease progresses to the more serious level of NASH. So unless you are diagnosed early and you find the support you need to make changes to improve your health there is an unknown risk of this developing to a deadly diagnosis.

Even if you find out that you have NASH with Fibrosis  finding a good support group can mean that you SLOW or stop the progression of the disease. I have a large number of members who are staying stable at a higher level of the disease by altering their lifestyle choices to prevent further damage to the liver.

Our Fatty Liver Group on Facebook was created in 2008. We have over 1200 members from all over the world and we are a very active supportive group. Please see some of the comments below for what people said when I asked what the Group means to them. I am sure you can relate to one or more of their stories if you have been told you have fatty liver disease.

To join the group https://www.facebook.com/groups/fattyliversupport/

 

Elisa Davis I love this group…you all have made a huge difference in my life since joining…i have more answers to my illness….the support is so wonderful

Mike Murray It’s so hard to talk to people about our fears, enzyme numbers, successes. Who knows what enzyme levels even mean? It’s meaningless to most people. I can’t imagine the past few months without the support I have from this group

Theresa Prebula I don’t feel as lonely and crazy about how feel with my liver disease.

Bill Pinson I wish I had checked on a group like this or had more information, I may have been able to keep from needing a Transplant, could still have my old job and my life would be as it was. I lost my retirement, nest egg and all savings along with material things I had accumulated to keep the family going.

Priscilla M Simoneaux I have enjoyed the fellowship with other people who understand what I’m going through bc they have the same disease that I do. I don’t have to make excuses or explain myself. I’ve enjoyed getting info and encouragement from others to help me with this and to stick to this new healthy lifestyle before it progresses. Mostly, the friendship from you Michelle Clermont and the info you’ve given with your work that your doing to take this to a national stage to get the world to notice what’s going on and to take this seriously. Not enough is being done to make the younger generation realize or understand what leads to this. I don’t feel alone or lonely bc I have this group and I know bc of you that there are others out there going thru the same thing I’m going thru.

Nancy Fowlkes I love being a part of this group. Sadly I didn’t know about it before all of this happened to me but I feel like I have learned a lot and hopefully I have helped others too. No one else knows quite how it feels unless you are going through it our helping someone else go through this. I don’t know if many people know this or not but this group knew about me way before I knew about you guys! Pam Qualls Maloley heard about my story through a good friend of mine and shared my journey with this group and some of you joined my prayer page and followed me. That meant a lot to me! Fortunately I made it! But I was in the same position her friends brother was in. It was too late for me to reverse it. You guys are great and I appreciate the friendships that I have made and this group helps keep me sane sometimes.

.Pam Qualls Maloley The friendships I have made in this group have become family, one even helping me out financially. No matter what the outcome of this disease for me, I will count it a blessing because of these people.

Linda D Roy I am new to this group but have learned so much. Group of loving people who understand because they are experiencing or have experienced similar things. Glad that I found this group and hope I can in some small way help someone or encourage someone else. One thing I can certainly do … Pray for everyone

Francine Irwin McGerty I know I haven’t been around on here a lot lately..but this group has changed.my life! You’re my family, you’re my friends and your the only support I have. Without this group I would have given up. And I can vent to anyone on here and no one judges me. You are all always here for me. Xoxoxox

Ganny Piro The people on here have made me believe that I am not crazy! My Doctors have not taken me seriously for years. I am now taking control of my life and my health. I will be eternally grateful for the support and information you have given me. Although we may live worlds apart you all feel like part of my family. Thank you!

Melissa Harbin Waid I felt alone & in the dark 4yrs ago when I was diagnosed. I was constantly reading and searching on the internet for answers to my questions..even though I have a fabulous hepotologist and supporting family I was afraid of dying. when you go in the hospital to get your gallbladder out and the surgeon tells you “you have cirrhosis ” that’s hard to swallow! 
I am very thankful for this group & all of you..there are few that I have become very close with and have a personal relationship with & feel like I have known forever though i’ve never meet them in person. 
Michelle Clermont, the founder of this group, I ‘ve said before to you that it saddens me that you found it from your daughter’s illness.. I applaud you for being the mother that you are and fighting for her. In the process we are benefiting from it..I thank you and I love you! We are here for each other whether it’s 2:00 in the am or 2:00 in the pm..that’s why I love this group.

Sara Skinner I was very scared and confused at first. I am only 30 and not a big drinker. Although the DR said it was Non-Alcoholic I only ever related liver disease to people who were considered heavy drinkers…and that is what most people think where they hear that I have liver disease. I don’t even argue with them. I know that people who really know me and care know that I am no alcoholic that drank my liver bad. This group gives me strength and courage to face the disease. It made me want to learn more about what is going on in my body and what can happen. I have learned of certain signs to look for to know what to ask my doctor about.

Gwen Davidson I didn’t think it was a big deal as I was told you have fatty liver. Lose weight exercise more. Nothing else. This group has made me realise it is a big deal and that I need to take control of my health  I also now have a list of questions to ask my doctor when I see him on the 27th.

Belinda Anne Tamara Sydenham I love this group. I have made so many special friends like DaliborMichelleRuth to name a few I know there are others that has helped me as well and still are. for me I find I have trouble talking with people cause I am so shy and all so I always bottle things up inside of me. so when I found this group I thought why not join and since then I have been given words of encouragement and have learnt alot along the way in my healthy journey in trying to stay healthy. So I thank you to this group for everything!
Kiran Chatha It gave more insight in to what is happening inside my stomach. It gave me a hope that, yes, I’ve real friends who can understand my situation and propose possible solutions. It gave more knowledge about my situation and now I can ask the Dr more questions. Can take more informed decisions. It made lot of difference. My mother passed away almost 15 years back with Cirrhosis. Had this group existed that time and had I been part of it, it could have made a difference. This group means a lot to me. Thank you all for your support. And thank you Michelle, for creating this group and making me part of it.
Robin Shaw When I was told I had NAFLD, I was also told that lots of adults have it and it’s nothing to worry about. So for a year, I took the advice and went on my merry way. When other health issues came up and I started looking for answers, I found this group. It has been encouraging, informative, at times heartbreaking, often funny…it is a safe place for me to learn how to cope and how to care for myself. In this group, I feel loved, accepted, understood, challenged to keep making the right choices…it feels like family, and I’m so very thankful for y’all!
Ruth Pinciotti Shegda I have tons of health issues from having an undiagnosed autoimmune disease until my 40’s. When my doctor told me 4 years ago that i had a fatty liver – – and do not worry just lose weight, alot of people have it”..i believed him. In 2013 when i had my annual ultrasound for the liver he told me you have gallstones. I decided to research on my own and found this group. it saved me!!! I finally understood what was wrong and what proactive steps that I had to take to help it not progress further. So many people here including Michelle Clermont, Melanie Melaine Smith Dalibor Smolík to name a few have been so patient and kind in answering even the smallest question that I had. I also made amazing friends in several members.
Marguerite Elliott Even though I’m 4 years post transplant, it was not until joining this and the Transplant Survivors and HE group, that I have become more aware of what happened to me. Although diagnosed with NASH in 2007, I personally had no idea of what lay ahead. I truly thought that having the varacies banded was my cure! Following my BIG HE coma in June 2009, my brother became quickly educated, but I did not really comprehend the seriousness of everything. I know some people figured I had just given up, as I found it difficulty to walk, eat, carry on a conversation and basically just live. I now recognize that the disease and particularly HE robbed me of almost two years of energy, cognitive reasoning and memories. Prior to my HE coma, resulting in two days on my bathroom floor, I didn’t have the where with all to do anything, but the most rudimentary research on NASH. In the past month, I have learned more, just by reading people’s comments and following links. I’m not sure if knowing would have made a difference in what was happening, but I don’t think I would have become so depressed thinking I wasn’t trying hard enough or that the confusion was permanent. Also, reading other people’s comments has triggered some memories, which I am thankful for. I am so happy that I stumbled upon this and the other groups. Perhaps, doctors should inform their patients of these groups, so that people can prepare themselves as best as possible, for what may lay ahead.
Denise Miller-Powers When I found out just a couple of weeks ago, I felt to overwhelmed and afraid. So I thought well lets just see if there is some one on FB. I found this group and I am so glad. It has helped me to know what to ask, what to look for in some signs. How to eat and most of all the great support from people. At one time we were strangers to one another and are now a family struggling through liver disease together.
Terri Stone Bordelon I came here in April 2013 suggest by a friend. I was so alone, my family thought because I was trying to find information on the Internet I was adopting all my symptoms from that. Even my dr would tell me to stay off the Internet. Everyone was mad because I was researching every symptom I could think of, because my doctor told me absolutely nothing. 
When I found this place and I got such warm greetings and most of all understanding, I cried like a baby. I kept on fighting and researching everything and learning from you guys. I got a diagnosis a couple of weeks later. This group has been a comfort zone and my strength! Thanks to everyone here! OXOXOXXO
Connie Kaye In 2011 when I was diagnosed I was so lost. The docs told me what I had but they were so vague as to what to do. Lose weight and exercise. Ok. How do I do that? There was so much conflicting information on the internet and I felt utterly alone. I floundered around and didn’t get anywhere. My family didn’t understand. They still think I am just a hypochondriac. Maybe I am. But there is good reason to obssessively worry about one’s health when you have the possibility of a transplant at some point in your future hanging over your head. Finding this group more than a year ago literally saved me. Support, information, and friendship helped me develop a plan and gave me the motivation to stick with it. I honestly don’t want to think about where I would be today if it were not for this group. I love youMichelle Clermont, and all the friends I have made here!
Cheryl Lynn First and foremost, sadly I know I am one of many…too many. This group lends support to each member and education is added daily. This is a constantly evolving disease. Every day we learn something new it seems. Some days I am ok dealing with this and others get pretty down so its good to have a group to sound off in. Thank you!
Suzy Freeman I find this group very comforting. There is a great deal of support and patience with we newbies to the group. I feel that I can come here and not only learn but I could vent if I feel the need. It’s nice to “be around” people who don’t think that you’re being a whiner. And, I really do appreciate the knowledge that I’m finding. So many people aren’t getting information from their doctors. Sadly, I don’t think a lot of doctors are educated about NAFLD/NASH.

A Fatty Liver Disease Story – Don’t let this be YOU!

So your doctor has indicated that you have a fatty liver and that you should go home to diet and exercise.  You trust your doctor they have taken care of you for years. You don’t pay much attention to what he said about diet and exercise. If this was serious he would have been more concerned.  You go on with your life, wings and beer with your friends, ice cream and soda pop with your kids. Life is fun and you don’t feel sick. Exercise is walking the dog 2 times a day you make a point of using diet pop and low fat products at home so you know that you are going to lose weight someday.

A year later and you start to notice that you are having a lot of stomach aches that make you remove spicy wings from your diet.  This doesn’t seem to help so you keep eliminating foods you think might be causing them… You start to notice that on the walk with the dog you are getting tired much faster. You promise yourself you will start to go to bed earlier at night that should help.  Overall you feel off but your life is stressful and you are aging so it all makes sense.

You get the kids to walk the dog. You know you can’t give him the exercise he needs so you give that up. You mention to your family that you aren’t feeling well and they laugh it off and tell you to stop eating chips!  You start to notice that you are incredibly itchy. You are sure something isn’t right so you go to the doctor.  The doctor gives you a steroid cream to help with the itching and suggests ant acids for the stomach aches. As for the general malaise he suggests a multivitamin and asks you to come back in 3 months to see how things are.

You come down with colds and flus and you can’t seem to fight them off anymore. You load up on Vitamin C and make a note to talk to your doctor about that. You are so tired but when you lie down to sleep you are awake with the pain in your stomach. You are taking so many ant acid tablets but they don’t seem to help. The itching seems to move all over your body, there is not enough steroid cream to cover your whole body. You get aggravated easily and your memory seems to be failing your family is getting tired of your constant whining and complaining.

When you go back to your doctor you tell him that you are fed up with feeling awful. He decides to run another blood test and refer you to a gastroentologist. The appointment for the gastroentologist is in 3 months.  Your doctor doesn’t call back regarding the blood test so you wait for the gastroentologist appointment.

The specialist looks over all your reports. He isn’t sure if this is a gallbladder, or pancreas issue or possibly a liver issue. He orders an ultrasound to see what is happening in your stomach. He sits you down and tells you that based on what he sees your liver is in trouble.  The specialist schedules you for a biopsy and tells you that you have NASH. The biopsy will be scheduled as soon as possible.

After the biopsy you learn that you have NASH and it’s leading to Cirrhosis.  WHAT?? How would I get Cirrhosis? I don’t drink that much I am not an alcoholic!  You have Non Alcoholic Fatty Liver Disease.  It’s a shame you didn’t catch this before the damage was done. We will monitor you closely but you are headed for a transplant.

Please do not be him, when the doctor tells you that you have Fatty liver disease pay attention and change your lifestyle before it’s too late.

Fatty Liver Disease – Do Not Dismiss this Diagnosis!

Fatty Liver Disease is a growing epidemic all over the world. I have been writing blogs and running a support group for people with this disease since 2008. The group has well over 1000 members now and I have learned a lot from running this group for the last 6 years. I have started writing a book that will be available this spring that shares stories and quotes from the members of the group and covers the following topics in detail plus lots more!

1. This disease doesn’t only impact obese people! People with eating disorders, skinny fat people with fast metabolisms can be impacted if they are malnourished. Children as young as 2 are in my group and there are at least 2 genetic factors that have been identified so far.

2. Its Not just Food! Food absolutely plays a large part in the management of this disease. If you have lived on processed foods your whole like you have a lot to learn about eating healthy to protect your compromised liver for the rest of your life. Acetaminophen is being overused and it is creeping up to becoming one of the main factors in causing Fatty liver Disease. Statins show up a lot in my group being pointed at as a high number of people get diagnosed after they start that prescription. Antibiotics, chemicals that you work around, products that you put in your hair or on your body can also be the root of your compromised liver.

3. There are REAL symptoms associated with this disease. No matter how often a doctor will tell you its benign I can tell you from 1000 people that there are shared symptoms within the group and if most of them share a symptom I am confident that the symptom is related back to the compromised liver.

4.People die from ignoring this disease. I have seen at least 10 people die in the group in the last 6 years. The truly sad part is that it is usually due to the fact the doctors told them that they just needed to exercise and lose weight and the problem would go away. That can be true if you do that at the beginning of the disease setting in. BUT if you do not figure out WHAT caused your disease and eliminate that item I can promise you that your disease will continue to grow until you start to deal with water retention and are being admitted to the hospital because your liver is extremely damaged now and you need a transplant. This can be avoided by truly analyzing your lifestyle up to the diagnosis and determining what the possible sources might be.

5. There are success stories! I have members who have had transplants and members that have reversed the disease in its early stages.

 

If you would like to be part of our fatty liver disease support group you can find it here at this link:

https://www.facebook.com/groups/fattyliversupport/

 

The Yeast Connection

So much is going on in my life, since the last time I wrote to you.

I am writing a book about Fatty Liver Disease based on the stories in my facebook group.  I am researching the start of A charitable foundation for Fatty Liver Disease as well . The goal of that foundation will be to educate the public about the risks they are taking with their liver everyday in a world full of chemicals in our foods and in the air we breath.  Research will be the second goal and that means I want to see more definitions of what can cause Fatty Liver disease so that people do not feel shamed and doctors can stop rolling their eyes at obese patients and treating them like second class citizens.  The last goal and one I am most passionate about is to get the name changed in the medical community. What an awful name Fatty liver disease is. It makes patients feel ashamed , it makes doctors treat you like you ASKED for this disease. It makes the public picture a morbidly obese person and also think that THEY ASKED for it!! I have enough proof to show that its genetic in some cases, Chemicals and even minerals can be overloaded in the body and trigger the liver to start acting up, A nasty virus, attack on other organs in the body can cause the liver to overwork and start this cycle.  I believe that a Hepatitis immunization shot that my daughter had to take before she went to Italy in 2008 is very likely the trigger for her liver to start acting up! So lots for me to do to make this successful but I will!

What about me huh…what happened to all my health goals and focus on weight loss to be healthier. It was important for me to put that on a shelf while I was on the roller coaster of life after losing my job. Now I have direction and I also know that there is a possibility that one day I could donate up to 72% of my healthy liver to my daughter if she ever needs it.  This lets me refocus on getting healthy and losing weight. I want to be the picture of perfect health if that day ever comes. I do not want to be the overweight candidate who is rejected due to the condition of my own body!

So the next step in my personal plan will be to go on an anti fungus diet to clear my body of toxins. All the stresses that the last 6 weeks have brought into me are happy little toxins floating in my body preparing to take over and make me SICK….sorry toxins the party is over. I will have my 42nd birthday on May 13 and the following Monday I will be starting the Yeast Connection diet.

Our bodies are full of yeast , it loves the warmth of our inner body, it came in when we took anti biotics, when we use birth control pills, when we have major viruses or infections, when we eat meat that came from an animal that was fed antibiotics, when we treated acne or maybe when we treated athletes foot with a topical cream….  It will show up with headaches, depression, skin problems..we will wonder why we are always exhausted…very general symptoms that we never connect to a fungus living in our body.

I have a lot to learn about the yeast connection still but essentially my diet will become focused on complex carbohydrates. Most grains will be gone, most meats will be gone. It will make my daughters liver detox diet look like fun! however, until the fungus is out of my body I will not lose weight effectively and I will continue to have skin problems. So yes I will be re focused and I will be back on track.

Life is creating the path I should follow…now its just time to go for it! See you on the path  It will be an interesting journey!

Hugs

Michelle

http://www.facebook.com/?ref=home#!/group.php?gid=40124237301

http://www.gethealthywithmichelle.wordpress.com

michelle_clermont@rogers.com