Filling the void of love from parents

Filling the void!

read a very powerful article that talks about how girls deal with not being loved by their mother in my case it was both parents but the descriptions of the ways we self soothe perfectly describe me. I am comforted somewhat knowing that picking at my skin and a bad relationship with food are expected reactions in a house with no love.

I am excited knowing that working through these traumas will allow me to heal the parts of me that relied on self harm and food to release a new me. Its difficult to imagine not scratching my skin when I am anxious, angry, hurt, self loathing. It is hard to imagine not filling sadness , loneliness and desperation with comfort foods.

I have tried to lose weight over my life no matter how successful I have been the weight comes back I see it as a  shield that protect me from pain, this doesn’t do a very good job for me but not easy to let go of. That means I respect myself enough to release the weight and there has been a fear that has stopped any weight loss efforts. I know this work changes that for me.

Skin Picking is my version of self harm. i have used lotions and potions, I have used bandaids, makeup, and clothes to cover the scars and cover the open spots on my body. This guarantees i feel ashamed and feeds my anxiety.  The problem is that I can get lost in picking my skin not caring about the next day or moment of the results.  I hate when they bleed heavily but its also a release of tension from under my skin.

 

Both of these habits gave me a small sense of control in a crazy environment.

Compulsive behaviors – I have done all of them at some point. At 17 I was drinking heavily and very promiscuous . When I was making a lot of money I would shop compulsively

Somewhere in the last 10 years I stopped drinking and I have not had any money  to shop compulsively. But i still make some financial decisions that are not wise. I have not been sexual with anyone in almost 2 years. So I have to now learn how to do all these things in a healthy way.

Hurtful relationships  –  My ex husband rescued me , he did hurt me in many ways but i hurt him too. There have been boyfriends who have been mistakes since then but if anything I have shut myself down from allowing anyone in to be able to hurt me.

These are things that don’t feel safe to me and I have to do the work to allow people truly in to my soul. My 48th birthday is in May , I know that my 48th year will include huge growth for me and I can’t wait to see the life I can have without these traumas impacting my choices.

 

 

 

 

 

 

 

 

Guest Post – Vanessa Dawn – Health Impacts of Societal Change

My Wheels R’ Spinning…..How many of you have ever bought a car only then to realize or become aware how many others just like it are on the road? Ive caught myself saying, oh look, now that I got my car, there are all kinds just like it. In reality, my awareness level just heightened. I felt the same way this past week while on vacation at the beach! First let me say to anyone reading this…I am in no way insinuating those here are obese etc etc or at fault for their disease. Doing so would be hypocritical of my own self. I am merely pointing out how my observations brought me to a different level of “awareness”. 1st—all I see on tv are beautiful, nearly anorexic sized women glamorizing their thin bodies. I have always tried to teach my girls that its not reality. My week at the beach was a far cry from what we saw on the old show “Baywatch”. I was saddened actually by what I saw. Of how the views have changed drastically from now compared to my first ocean visit at age 14, some 29 years ago!!! Have you heard that 2/3 of America is obese? That is the statistic. According to America’s criteria, obesity is when our BMI (body mass index) is above 28% determined by a height weight ratio. My awareness of this statistic was heightened when i was surrounded by so many people in one place to make the comparison. I observed very few people that would be considered in normal range, & it alarmed me. Especially the population of kids! And yes i include my own family in this observation. Whether it was at the beach or at the amusement parks, I felt surrounded by a new future population of brewing illness. Observing the consumptions of processed drinks, deep fried funnel cakes topped with sugar, corn dogs & then observing the swarms of people going out for that huge dinner at 6 everyday as an activity or treat. Furthermore i was saddened by the obese children I saw “out of breath” easily while attempting to do any exertion such as riding the waves, the parents who sat on the sidelines instead of engaging in activities & those I saw who couldnt ride the rides at the amusement parks or sit in a typical lawn chair simply because of size limitations. To know me is to know that i never meet a stranger which is why i took it upon myself to strike up a conversation with a few that i encountered who appeared to be within normal weight….all of which claimed they worked out regularly! My daughters & I had conversations about how what they were seeing now as the “norm” was not the “norm” 30 years ago. Just looking back at old family photos….everyone was so thin! I personally experienced lots of ridicule & fun poking for my own size growing up & by todays standards was nowhere near overweight. After my trip…i cant help but feel tricked by the food industry or has the human race brought it upon ourselves or have we all been mere participants in the change! This change didnt happen over night. But i feel like it has been a gradual, subtle change over the years & generations that “sneaked” up on us. I grew up on a 100 acre farm in Kentucky. My mom who is almost 80 now prepared everything from scratch. We spent summers raising our gardens, canning, raised & killed our own beef, pigs, deer & raised our own chicken. We were modernized yes. My dad was a mail carrier & my mom stayed home & worked the farm. There were hardly any processed items in our house & never a soft drink. Balogna was probably the worst thing in our fridg & lard was the oil of choice. I never had a riding lawnmower till i was 19! I push mowed several acres each week, rode my bike a lot, only ate out maybe twice a year! Gradually our lands have been tracted out & sold because it earns us more monies in the short term. Our demands for food have been put on our groceries because we arent raising our own. If we are putting this demand in the hands of others then have we really been tricked or have the manufactures been forced by us & greed to resort to GMO’s to produce large quantities to meet our demand? My grandma lived alone & died at age 97 from heart attack. My other grandparents died in their late 80’s of natural age causes…no cancer, no diabetes, no disease other than a lil dementia. I feel like I am a product of a new generation of disease. The cause & the effect! My daughters even noticed how our local Amish community lives, watching the kids push mow the yards, working in the garden etc. When i was young, i didnt have to ask what we were going to do today…because i knew! I was up by 7am…i didnt have phones or computers in my hands all day. I made mud pies, played tennis against the barn with a board & ball, swam in the creeks, played in the rain, had no germ-x….was rarely ever sick! This story like so many others Im sure. Its not all about weight, but about habits, the evolution of change….lost arts of self reliance versus dependence on others, greed etc…so many factors in combination…not just a finger pointing blame game. A societal shift in priorities! To the point I observed road signs threatening imprisonment for littering in a society where child abusers go free! Where animals are often given free surgeries & vet care while humans are homeless, sick, children are without healthcare. A generation taught to live any lifestyle & just get a pill to fix the effects! And another pill to fix the effects of that one & the vicious cycle continues. Where does it end? Where did it begin? If 2/3 of society is obese…and 1/3 to 2/3 have fatty liver…i wonder what is the correlation of the two? With the increasing need of liver transplants, i cant help but wonder if the demand will exceed supply of healthy livers in our future…more so our childrens future? Organic, non GMO food is more expensive, but not near as expensive as the medicines required for disease. I had no choice but to change lifestyle because I could not pay for the $1200 a month of meds when i didnt have coverage! Now I have coverage, and my Xifaxin alone is $1,400 a month!!! It & URSO combined cost my insurance almost 2 grand each month!!! Thats a lot of organic, healthy food! Food scares me now. Medicines scare me now! I am living proof that it can all be toxic & life threatening & have long term effects. 3 Years ago…i was on over 29 pills each day just to fix the thing each pill caused! I was toxic! Crazy! At age 27, i believed them when they said my meds where safe while pregnant, only to have my child born with a form of spina bifida birth defect that will effect her the rest of her life! The same drugs that had adverse effects on.me have also been offered numerous times to my kids despite me explaining how they effected my liver! They insist they are safe! Theres a reason why supplements & herbs arent recommended! They arent regulated! The same humans preparing our food, our meds etc…are preparing our supplements as well. I dont live my life in fear no, but i am choosey now & determined to at least teach my girls better ways. Even if they make other choices, i will have taught them alternatives! Seeing & living with me throughout this journey has indeed been a good teacher for them. Just posting on FB wont help I realize, i do plan to be a more active participant in creating awareness & change in our society. We think our voices dont matter but they do! And our decisions & actions matter more! What we demand creates the fire thats fueled. There are no short term fixes in life, just instant gratification with long term results.
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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

Homeless Happens campaigner Jason McComb to take message across Canada

great article about the Canada Walk Jason McComb is starting April 1st please read Canada!

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/

 

 

 

 

Fatty Liver Disease and Fibroscan Testing

As per the Canadian Liver Foundation:

FibroScan (FS) is a completely non-invasive diagnostic instrument to measure fibrosis (scarring of the liver) of the liver. FS uses an “elastic wave” (transient elastography) to measure hepatic stiffness which correlates with fibrosis. FS is based on the premise that as the liver becomes more fibrotic, the tissue density increases and the liver becomes less elastic. FS is easier to perform, safer and less expensive in comparison to a liver biopsy.  Measurements with the FS can be taken at multiple locations of the liver whereas a liver biopsy tissue sample is taken from one location in the liver.

Fibroscan is a new technology that assesses the stiffness of the liver. The stiffer your liver is, the more damaged it is by fibroids and dead liver cells.  I was very interested in this new testing method as my daughter has never been considered for a biopsy.  I also run a group on Facebook with almost 1200 members around the world. This is important as a new testing and monitoring tool for Fatty Liver Disease.

Biopsy is currently considered the gold standard in testing the condition of your liver. This is done with a needle that is inserted into the liver to take sample tissue out and analyze its condition.  The problem with this method is that you can’t test the entire liver. So if you are gathering samples and you don’t happen to hit an area where there is damaged tissue, the result will falsely indicate that you do not have liver damage. Blood testing also does not provide consistent reliable results. I have members in my group that are in the more advanced stages of the disease who receive clean blood tests. I do not understand why that happens but as of 2014 I do not see either of these as a complete picture of the condition of your liver.

The fibroscan machine looks very much like a standard ultrasound. There are 2 probes that are positioned on both sides and a computer screen in the centre that has 2 testing abilities.

The first test is looking for the fatty infiltration in your liver. They will use a probe with a short tip that captures the shear wave velocity. If the probe receives a quick response it has found damaged liver tissue and been returned because the wave cannot continue past the damaged liver. If the probe takes a longer time to get the wave returned it means that your liver is healthier.  My daughter lay on her back and then had right arm up over her head. She was directed to turn towards her left side so that the technician had the best possible access to the liver. A spot of ultrasound gel was placed in 3 spots on her liver.  The technician took the probe and placed over the gel spot. My daughter described the sensation like it feels when a doctor is testing your reflexes.  Approximately 10 readings are done for this test.

There is an important consideration for this test. If there is a lot of belly fat around the liver this test may not be able to access the liver with this probe.   My daughter was able to get this probe to read her liver.

The second test is looking for Fibrosis and also dead tissue in the liver.  The probe is longer and it is able to read deeper within the liver. The same process is used and the results of both tests are sent to your hepatologist to be assessed.

The test results can provide you with a sense of the current status of your liver and if it’s done yearly you can monitor the progress of your recovery or additional damage that is occurring.

The Fibroscan technology was just released and approved in the United States in April 2013. The Toronto Fibroscan Clinic is receiving patients from the states as there are long waiting periods for the testing and the costs can be very high.  In Toronto you are not going to have a long wait to get the test done and you will be paying closer to 100 dollars versus 400 +. The Toronto Clinic can be reached via :

Sun Life Financial Centre

3300 Bloor Street West

Centre Tower, 11th Floor, Suite 3140

Toronto, ON  M8X 2X3
info@liverscan.ca

Tel: 416-268-0150

Fax: 647-494-3243

www.liverscan.ca

 

My daughter’s results came in with the following findings:

“ This FibroScan® suggests mild steatosis (grade 1) with mild fibrosis (stage 1). The prognosis is excellent. In patients with liver stiffness <6 kPa, the estimated 3-year risk of liver-related complications/mortality is ~3%.

 

RECOMMENDATIONS:

1) Management of risk factors for fatty liver (e.g. weight loss, optimization of diabetes and dyslipidemia, and alcohol minimization).

2) Recommend a repeat scan in 1 to 2 years for disease monitoring. “

 

Robert P. Myers, MD, MSc, FRCPC

Hepatologist, Medical Director, Liver Scan Direct

Dr Myers sent the following note along with the results:

Hi Michelle. Attached is Megan’s report. The good news is that it suggests only mild, stage 1 fibrosis so the medium term prognosis is very good. I hope it reassures you two somewhat. Unfortunately the Fibroscan can’t differentiate NASH from non-NASH, but fibrosis is the most important outcome.

 

What this gives is a baseline, we do not know if when she started with this disease in 2008 it was better or worse than the stage 1 steatosis and mild fibrosis. Now we will refocus our efforts for clean eating and have this test redone in a year to see if this is reversible with diet and exercise or this will be permanent damage that my daughter will need to be aware of.

So with these comments and the results I want to stress that Fibroscan will not be the only test that you should rely on for answers about the current stage of your disease. You should note that this test cannot differentiate between NASH and NAFLD.

My recommendation is that when you receive a blood test that indicates higher values in the ALT and AST results have that confirmed via an ultrasound. The ultrasound will confirm if fatty cells are present in the liver based on the difference in the way they are displayed on the screen. The ultrasound can only tell you if they are fatty cells whether there is fibrosis, or NASH is not confirmed via ultrasound. If both the ultrasound and the blood tests confirm the presence of fat in your liver, then you can use the non-invasive Fibroscan test to determine if there is fibrosis. If there is further clarification required the Liver Biopsy can provide an analysis of a specific section of liver tissue.

Fibrosis indicates that there is Scar tissue in the liver. This occurs when the liver tries to repair damage in the liver and the repair process goes wrong. The more often this happens the more serious the liver disease will be. The damage can be caused by alcohol, prescription drugs and viruses.  When the liver is composed of more scar tissue than healthy tissue the disease has advanced to Cirrhosis.

I would advise patients with fatty liver disease to consider the Fibroscan an important part of monitoring the progress or improvement of the disease.

 

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 Dalibor, Michelle, Ruth 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.

6 Years for a complete diagnosis! This HAS to change!

My daughter was first told she had NASH in 2008 at age 11, now I know that there is NO way that this pediatrician could have known if this was NASH or NAFLD from the ultrasound and blood test results but he was the first to say no reason to do a biopsy or any other tests. My daughter would just have to exercise and eat better.  No other advice was given, no direction as to what it means to eat better with liver disease.

As the years went on we had all kinds of doctors discount my daughters illness, I asked for referrals to a hepatologist and we were sent to a gastroentologist who also shrugged their shoulders and said no point doing any additional testing. My child has been through hell for the last 6 years with extreme vertigo, broken bones that wouldn’t heal, extreme menstrual bleeding and more colds and flus than I can count. Nothing is simple for my daughter any type of trauma to the body in illness or injury takes her down for weeks, never just days like the rest of us. 4 months for a broken toe, that the rest of us would see heal in 6 weeks!  No doctor has ever said hmm well maybe the issues in her liver are causing other things not to work as well in the body.

The liver controls our immunity, the liver controls our metabolism, our eyes, our toxins to the skin causing rashes. When your liver is compromised then there are serious impacts on your day to day life.  But no doctor has ever figured this out for my daughter.

So last week my daughter had a new non invasive test in Toronto called the fibroscan.  This does not need a referral and we were able to book a quick appointment If we had not had this test done we would still be in the dark as to the actual condition of my daughters liver.  The test was easy and fast and no negative impacts on my daughter. The results say that she has mild stage 1 steatosis and mild stage 1 fibrosis. The most important part is clearly fibrosis. This means that she has scar tissue in her liver and it means that the disease is more serious that any doctor has ever considered.

The good news is we now have a baseline to work from and we will focus everything on getting that fibrosis reversed. However, what we will never know is was the disease worse 6 years ago? Has it improved or gotten worse?

If any doctor in the last 6 years had considered the full picture for my daughter ,maybe we could have done this sooner. but nope she will be just fine they said…. Fibrosis folks …not just fine.

Demand that your doctor get the official details of your disease with a biopsy and/or a fibroscan! DO not let them say you will be just fine! IF we did not take this seriously my daughter could be on the transplant list by now. If not for my supporting those with this disease and not letting it go….this could be a much worse story!

 

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/