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

HELLP syndrome and your pregancy

HELLP Syndrome and Your Pregnancy

What is HELLP syndrome?
HELLP syndrome is a rare but serious illness in pregnancy. This illness can start quickly, most often in the last 3 months of pregnancy (the third trimester). It can also start soon after you have your baby. HELLP stands for Hemolysis, Elevated Liver enzyme levels and a Low Platelet count. These are problems that can occur in women who have this syndrome.

Women who have HELLP syndrome may have bleeding problems, liver problems and blood pressure problems that can hurt both the mother and the baby.
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Who gets HELLP syndrome?
Doctors don’t know exactly what causes HELLP syndrome. They also can’t predict who will get it. Any pregnant woman may get this illness.

Most women who will get HELLP have blood pressure problems before they get HELLP syndrome. (But you can get HELLP syndrome even if your blood pressure is normal.)

You’re more likely to get HELLP syndrome if you’re white and older than 25 years of age. You are also more likely to get it if you have had children before or if you had a problem with a pregnancy in the past.
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How can I tell if I have HELLP syndrome?
If you have HELLP syndrome, you may feel tired. You may have pain in the upper right part of your belly. You may have bad headaches and nausea or vomiting. You may have swelling, especially in your face and hands. Rarely, you may notice bleeding from your gums or other places.

Because many healthy pregnant women also have these symptoms late in pregnancy, it may be hard to know for sure if you have HELLP syndrome. Your doctor may order blood tests if you have these symptoms or if your blood pressure is high.
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How is HELLP syndrome treated?
The main treatment for HELLP is to deliver your baby. This may have to be done before your due date. Most women who have this illness start to get better a couple of days after their babies are born.

If you aren’t too sick, your doctor may wait a few days before delivering your baby.

You may have to take a steroid. This medicine helps both you and your baby.

If you have bleeding, you may need blood transfusions or other treatments in the hospital.

Some women who have HELLP syndrome get very sick. Rarely, this illness is fatal.
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What can I do to prevent HELLP syndrome?
There is no way to prevent this illness. The best thing you can do is see your doctor regularly and tell your doctor about your symptoms at every prenatal visit.

If you have HELLP syndrome during one pregnancy, you can have it again during your next pregnancy. The illness is usually less severe the second time.

Depression and a New Focus

I have been depressed. Absolutely without a doubt It started a few weeks ago when we learned that Megan’s foot is not healing and continued as I realized that in order to face the rest of 2013 I will have to back out of my passions in 2012.

My intentions with Jamie Oliver Food Revolution was to spread the word about eating whole foods and making sure our kids are healthier in the future by stopping the craziness now!

I got asked to become a volunteer in April 2012 and I accepted that challenge with excitement, I focussed a ton of my energy and support into creating a wonderful event in May 2012, I got lots of media coverage and the event was an amazing success.

My intentions with Ignite Health Ontario was to take the food revolution a step further and focus on the whole body experience, we need mental balance, spiritual balance, exercise, we need to eat balanced. Any of these factors being out of balance can cause illness and we always need to remember that.

I was inspired by Ignite London and additionally the creation of Ignite Culture where a full night of topics was related to arts and culture. If that could be done why couldn’t we create a night of health related topics. I was geared up and excited. I shared the idea in an ignite london talk and I had a number of great people come to me afte that to tell me to get in touch with them about this event.

We ran this event in October 2012 and it was a great success. I am very proud of both of these events and the work I did for them.

What I stopped paying attention too was the fact it was impacting my own stress levels, my ability to focus on work and now that we have no way to predict when Megan will be able to walk again I have to raise my hands and scream UNCLE!!

I decided that I need to shelve or back out of both Ignite Health Ontario and the Jamie Oliver food revolution for at least 2013. Making that decision broke my heart I am dousing the flames of passion with my tears. So over the last 3 -4 weeks I have been sleeping a ton, I have had a number of migraines and flus hit me. My Chronic Skin picking (dermatilomania) is at a level that I am struggling to get back under some control.

I have open sores on my arms. hands, chest, face and scalp. They are sore and begging me to stop. I am having so much anxiety around what I do with my life now. How do I translate that passion to taking care of my own health needs when I have never taken care of myself. Where do I start? How do I learn at 44 how to love myself when my entire life has been focussed on helping others. How do I get passionate about work again. There are quiet times that I need to fill with projects and I need to get excited about that and just do it. How do I keep the man beside me who has come into my life as a blessing and I can barely see with the challenges of working full time and being full time caretaker to Megan and the dog too.
I have been crying a ton and finally hit my breaking point last week . I made a doctors appointment to get Megan some more Tylenol 3 for pain and at the same time I asked to have my antidepressant Effexor increased from 75 MG to 150 MG.

I do feel lighter in my thoughts, I am not crying as frequently and do not feel as emotionally lost. I am now having insomnia instead of sleeping too much, I am having cold sweats but I assume thats related to upping my dose of Effexor and it won’t last long.

I have decided that I will focus on work, my health, my daughter, my boyfriend and I will refocus some of my energy to provide direction to Fatty Liver Disease support again. There are some demons that I will need to address in some counselling sessions and its time I took that step to take care of myself again.

I am not out of the woods but I will not hide the fact that yes I am dealing with depression again. I am also taking steps to fight back against its control on me. So 2013 will look very different for me but I hope to have some positive news for you all soon.

Hugs

Michelle

Guest Post – Heather Von St. James – Wife and Survivor of Mesothelioma

Heather asked if I could share her story and I am more than happy to!!

Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma

“Courage is resistance to fear, mastery of fear, not absence of fear.”
-Mark Twain

I hear it often from people, how brave I am and how much courage I have. Sometimes I just have to laugh, because, going through what I’ve been through with my mesothelioma battle, I don’t feel very brave. At times, the fear was so overwhelming, all I could do was cry out to God to help me. I would love to say that through the last 7 years, I’ve learned to conquer my fears. After all, Lungleavin Day, our celebration of the anniversary of my extrapleural pneumonectomy surgery, is all about overcoming fears. But I still have my moments, more often than I would like to admit. I have the usual fears creep in, my “scanxiety” I’ve blogged about before, little pangs of fear before I fly, but the biggest fear I struggle with is the fear of something happening to my daughter. This is something that has plagued me since she was born.

I’ve always had what I jokingly call puke-aphobia and, with having a kid, you know it something you have to deal with. This year has been particularly brutal on the gastroenteritis front for my poor Lily. Three times she has been sick this year in as many months. When she got sick the third time, the fear reared its ugly head in a big bad way. So much that I took her to the doctor and insisted he do a battery of tests to rule out anything. The thing I was most afraid of? Yep, cancer. Having dealt with cancer myself, and knowing so many others, my hypochondriac mind went right to the worst-case scenario. My husband, bless his heart, is always able to bring me back around to reasonable thinking. Although he understands why I go to the worst-case scenario, he doesn’t indulge it, and his voice of sound reason helps so much to calm me. Except in this case. I could not shake the feeling that something was seriously wrong. Turns out he was right. She is a perfectly healthy 7-year-old little girl. Every single test came back as normal as normal as could be and, for some reason, she has just gotten sick a lot this year.

The fear is crippling. The anxiety it causes makes my life miserable and those around me even more so. It is something that I have vowed to work on this year to not let the fear get out of control. Someone told me once that the word “FEAR” is an acronym for “False Evidence Appearing Real”, and when you think about it? It is TRUE!! The fear is almost always worse than what I’ve imagined and blown out of proportion in my mind. I did something this time that was not easy for me to do. I asked for help from people who I trust and admire, and their guidance and prayer really helped me overcome this obstacle. They gave me some tools to use to stop the cycle and basically send that fear packing. Frankly, God is the one who gives me tremendous peace. I find that prayer and reading His word, writing scriptures that speak to me, and keeping them in a little notebook for my use is a way for me to keep grounded.

With Lungleavin Day coming up, the opportunity is here to write our fears on a plate and smash them into the fire, I’m going to once again take control of my emotions and overcome. I know I have the power to do it; sometimes it is just making the choice to do so.

I hope you too will do something on February 2nd to overcome your fears in the spirit of Lungleavin Day. If breaking a plate is over the top, I find that a paper plate works great, and burning it, or tearing it into hundreds of pieces. If you struggle with fear, no matter what it is, taking control, finding the root of it, and addressing it helps takes it away. I also find humor is a great way to conquer fear, hence “LUNGLEAVIN DAY” It was born out of the desire to make something funny out of something tragic. It is the day my lung left my body.

For this, my 7th Annual Lungleavin Day, I’m conquering fear by surrounding myself with amazing people and sharing our night with anyone who wants to join in. I hope you can join us. Go to my Facebook fan page to join the Lungleavin Day Event and we will be live webcasting on the night of February 2nd, 2013 6:00 pm to whenever the last plate is broken (Central time).

I hope you, too, find something healing about the day just like we do. Together, we will make 2013 fabulous.

Read more: http://www.mesothelioma.com/blog/authors/heather/fear.htm#ixzz2J0nHx1ru

Waiting to Breath! Megan fainted…

It was a beautiful Wednesday in London Ontario, I had a pleasant walk with Toby in the morning and laughed at his efforts to get the squirrel that had just teased him and went up a tree. I got to the office and things were quiet, settled in with my green tea and decided to contact Koworks London about doing monthly workshops on reading labels, designing grocery lists and the health implications in our grocery stores. I was making progress on many things and felt good that I had come out of my rut.

My phone rang at 11:40 a.m. Megan sounded out of breath on the other side and she said mom I just fainted. I asked how she knew that she had and she said she just got up from her bedroom floor where she had been putting her clothes on. Megan has not fainted since 2010.  I asked how she was feeling now and she said the dreaded word dizzy.  This is the word that strikes a nasty feeling in my gut.

Megan spent 10 months in a wheelchair due to Extreme Vertigo that no medical doctor could explain. The experience that we had during this time in the medical community destroyed any faith I had in doctors. The only doctor that took this seriously was the ear specialist who did full testing in her ears to ensure there was nothing triggering the vertigo.

Megan was put on Anti depressants and told this was all in her head. I took her off the anti depressants and we focussed on making her diet extremely clean and osteopathy. These were the things that made the difference. No doctor ever did.

I talked to Megan into the afternoon and the dizziness was replaced with light headedness. She has no idea if she had a seizure before she fainted or how long she was out for. Thats unknown and will remain that way. I took her to the walk in clinic last night and had her blood pressure and ears tested. Both were clear, this is such a familiar feeling. Nothing that doctors test for Megan comes back with a clear diagnosis. Everything with Megan is always gray.

So today I am holding my breath, waiting for her call, wondering if the light headedness has gone away, wondering if she is dizzy, wondering if she fainted again. If this happens again today I will take her to the hospital tonight for another checkup and any tests they need to do.

After work today I already have one appointment for Megan. She has finally admitted that she would like to talk to someone about her fears and concerns. I am happy that Megan has asked for this help as she gets frustrated with me getting upset about her health. This is her pain, this is her insomnia, this is her not being able to go to school and having no social life. I just hate seeing my child suffer like this. I will also start some counselling to help me cope with the constant roller coaster ride that this brings to our life.

I can’t escape the fear that this is the hint that she is headed back to extreme vertigo. That thought scares me so much. I can’t imagine another long period in a wheelchair for Megan. My 3 storey townhouse certainly does not make sense for us if she has this again.  I have to keep reminding myself to thoughts of now and not thinking too far ahead. But the memory of the time in the wheelchair does not want me too.

I made an appointment for Megan to see an osteopath in London in April. This is a good step regardless of whether the vertigo returns or not. I will keep moving forward no matter what the outcome is for Megan, but I sure could use your thoughts and strength for Megan to fight this!

 

Hugs

 

Michelle

 

Roller coaster ride in finding doctor for Megan!

I am so tired of doctors in general. They make me sad, they make me feel like I can never get the right answers for Megan. I moved to London Ontario in July 2011. This was a fresh start for Megan and I after 3 years of being talked down to by doctors and being told its all in her head. Megans life since 2008 has included the following realities that doctors have no answers for:

1. She has been bleeding constantly since 2009 with her menstrual cycle. With birth control pills its basically spotting every day, and then when her pill ends she deals with extreme bleeding that makes her wear 2 pads at a time.

2. Extreme Vertigo in 2010 that had her in a wheelchair for 10 months. She was 13 years old and in a wheelchair!

3. Colds and Flus that impact Megan take 3 – 5 times longer to recover from… you and I might be 5 days she will be 15 days.

4.Insomnia – This week Megan is getting 1 hour sleep per day. This is as bad as it gets but she averages 3 – 5 hours. 5 hours is a GREAT day!

5. Liver pain is there as a good reminder if she eats anything bad. Her liver tells her quite clearly. Sometimes its nausea and sometimes she looses her appetite.

6. Extreme dryness and redness on her arms.  Constant battle for Megan. Any creams or lotions tend to make it worse and make it sting.

She is a SICK kid. She is homeschooled due to these issues.

 

I have been trying to find a family doctor since July. Initally I started via the HealthConnect program in Ontario that is supposed to match you up with a doctor. So far that has resulted in NOTHING.

I tried finding the list of family doctors accepting patients and then we end up on a list never to hear from anyone. I call and follow up and there is never a good answer !

A friend in London recently talked to a family doctor in London about Megan and she was given the name of a Hepatologist in London that actually focusses on Fatty Liver Disease! This was perfect! But then found out that because Megan is 15 she is not eligible to be seen by this doctor. We were pointed to the Pediatric Gastroentologists!

The Pediatric Gastroentologist read about Megans symptoms and said he has seen 100 cases of Fatty Liver Disease and none of them with megans symptoms. They suggest we start over with a pedicatrician and search for the root cause

I have done nothing but try to find a doctor who will treat Megan with respect and truly look into her case uniquely in Ontario. So far I have gotten no where!

I am ready to burst into tears and Megan is scared that she will never get a doctor that care! She is cynical after The Hospital For Sick Kids in Toronto didn’t help her. They even put her on anti depressants at 13! We do not need more doctors patting us on the head and saying that this is all in her head. This is her reality EVERY DAY!

What do I have to do in order to help my child? Why won’t a doctor take ownership and truly focus on finding out whats wrong with her?

We are in Canada where Medical care is free. But its looking more and more like I will have to take her to the States to get the attention she needs.

She is 15 years old with a chronic illness and this is no way to leave a child to live!

Please if you are in London share this story with your doctor and ask if they will take her case on and help her! I just need 1 doctor to truly be there for her!

Thanks

 

Michelle and Megan

I gave my child Fatty Liver Disease…please read to prevent it in yours!

I am in the process of writing a book on Foods and your Liver. This was a decision I made due to the challenge of trying to help my 15 year old daughter deal with her diagnosis of Non Alcholic Fatty Liver Disease in 2008. Looking back to her childhood I know how she was made vulnerable to the disease.

I was a full time working mother of 2 children. Balancing the demands of commuting, ballet, soccer, doctors appointments and all of the other things that keep parents busy. That resulted in quick decisions for meals. We did not have time to chop veggies, wait for them to cook or think through a complex recipe.

Add to that the picky nature of children , the demands for junk foods that they saw on the TV or saw in their friends lunch box were always in my ear.

My parents did not pay any attention to healthy eating, my ex husbands parents did not either. My kids were destined to be a product of that.

My kids loved chicken nuggets, kraft dinner, hotdogs, pizza, hamburgers, dunkaroos, fruit roll ups, granola bars, yogurt tubes. I loved the convenience of liptons side dishes and uncle bens quick rice side dishes. They could be ready in 10 minutes, I could microwave chicken with shake n bake and boil up some frozen veggies and have dinner on the table in 15 minutes!  Chocolate Milk, Fruitopia, Sunny Delight, Koolaid, Gatorade, were the beverages of choice.

This was perfection or it certainly seemed to be. My kids were not super fond of fruit, my daughter loved salads so i would make them , she would cover in ranch dressing but hey at least the veggies were getting in.

My son ate olives a ton of them, he would eat the meat on his plate and if we were lucky we would get a few bites of veggies in him. He loved Rice.

This quick and convenient cooking was mainstay. On weekends we would try to cook sheppards pie, fajitas, tacos, things they loved that were a bit more substantial.

They would take sandwiches for lunch and lots of snacks from the cupboard. They loved eating the Mr. Noodles packages raw!

What I know now is that all of those foods that they had as mainstays were filled with Sodium, MSG, High Fructose Corn Syrup and all of the other inventions that companies have added to products to make them cheaper to manufacture, more addictive to the consumer and easier on the pocket book have trapped families into a vicious cycle.

What I did know was that I was a heavier woman and if I didn;t get things under control I would be at risk for diabetes, high blood pressure as I aged. What I did not consider was that my children could be at risk before they reached adulthood. In my mind this was something to worry about after you turned 40. Not at 10.

My daughter always had stomach aches…I always guessed she just wasn’t pooping enough. In reality her liver was likely complaining and telling her not to eat these foods from an early age. She was clearly vulnerable and her weight started to be above the normal levels by age 8. I guessed early puberty, I had gained a lot of weight for that and I developed early too.

In 2007 her health at age 11 started to go downhill fast. She got pneumonia was on 3 doses of antibiotics to clear that, she never really recovered from that and it was followed by MonoNeucleosis. In Winter 2008 she was diagnosed with Non Alcoholic Fatty Liver Disease. Life has been full of health problems for her since then.

In Early 2009 she started her first period and bled for 9 months solidly every day no breaks, very heavy bleeding. She became anemic and we started giving her iron supplements not knowing the iron was hurting her liver. Doctors put her on Birth control pills and it slowed the bleeding down in Summer 2009. She was then hit with extreme vertigo that put her in a wheelchair for 10 months. That ended in June 2010. Since that time she has been more stable.

There are ups and downs but you will never find the foods from her childhood in our home now. We eat fresh fruit, and veggies, brown rices, rice pasta, organic sauces rye breads ,and ocassionally we still eat poorly. But its not every day anymore, its not every meal. My daughter reads every label of every product we buy.  Its put back on the shelf if we find the additives or chemicals that hurt her liver on it.

If this could happen to my daughter so easily, could it happen to your kids? Please take the time to read labels, try to eat fresh and local fruits and veggies. Buy organic whenever you can. Avoid the processed yogurts, granola bars, fruit rollups, the aisles and aisles of tempation. Stick to the outer aisles and only travel inside aisles for spices, or organics.

I hope you never have to tell your child she has liver disease. My daughter will always have to be careful. Her liver was compromised as a child and every alcoholic beverage in her future will damage it further. Taking those chances as a teenager is normal…for her it will cause pain and have long term impacts. I do not know what the future holds in research or for her, but I do know what parents have to watch for and I will not stop until everyone knows about this disease!

Protect yourself and your kids, do not let companies compromise your liver with their addictive products!