Wednesday, December 2, 2009

Dealing With Spammers Who Claim To Have The Cure For FMS

Original Written: Dec. 2, 2009
Vol. 1, Issue 9


I hope that you all had a very blessed Thanksgiving holiday and this finds you all doing well and preparing for Christmas! Today I want to touch on a subject that has been a big debate as of late on the FMS support groups on Facebook™. I'm sure other groups on other venues are not immune either, but this still applies. I want to discuss the issue of people who come on to FMS support boards for the purpose of selling, or "spamming," products that they claim will "cure" Fibromyalgia or Chronic Fatigue Syndrome. I would like to share my thoughts on the subject.

As an infant, I was placed for adoption with two wonderful but very special parents. Both my mother and my father had something happen to them in their teenage years that placed them in wheelchairs for the rest of their lives. So as a child, parents from wheelchairs raised me. Now over the years, we encountered more "faith healers" then I care to remember. We are a Christian family and are very dedicated to the LORD, but we don't believe that Mom and Dad were punished. While we believed that the LORD could reach down from heaven and miraculously reconnect dad's spinal cord, or reverse the damage polio did to the nerves in my mother's body, we did not waste precious energy expecting that to happen. Instead, we went on with life and adapted the best way we could. We focused on what we had and did not worry about things that were out of our control.

So, why am I am telling you all of this and what does it have to do with spammers and scammers? Well, my parents were fiercely independent people. They both drove cars, graduated from college, Dad got a great job and bought our house. Mom stayed home and raised my sister and I. They did all of the cleaning, cooking, shopping, and all the normal everyday errands that everyone else has to do. So, we were in public with our parents a lot and encountered a lot of people who wanted to "cure" them. Specifically, being in the Bible belt of America, we encountered a lot of "faith healers". I'll never forget the time my dad was approached by a man who said, "If you just pray hard enough and come to my church, give an offering to the Lord and let me lay my hands upon you, you will be HEALED." To which my dad said, "What makes you think I want to be healed? I'm doing just fine, thanks, now my meat is spoiling I need to drive myself home and put away my groceries." He didn't get angry. Dad hardly ever raised his voice.

People who attempt to make money by sneaking into support forums on the internet have no tact and are no better than "ambulance chasers" to quote a friend of mine. If what they have really cures FMS, they wouldn't be in our support groups. They would be sitting in their mansion or flying to Paris on their private jet because they had made billions of dollars from having cured millions of people of a disease that is, at the moment, officially classified as incurable. I have far more respect for those people who have had success in managing their symptoms, create their own groups and are upfront and honest about what they are offering. They give you a choice, to join or not join. The choice is yours.

Now, just like my Dad, we all have brains. We have a choice. Rather, we have an OBLIGATION, to use our brain when we cross paths with people who try to take advantage of us. Perhaps they just want our money, or need to boost failing egos, or for whatever reason feel some need to cross our personal boundaries and interfere in our care. Whatever their motives may be, if we focus on just a few basic facts then it will all be just fine. Our money will stay in our pockets and our dignity will remain intact.

So let's break this down. If you encounter someone wanting to sell you miracle supplements, or get you into some type of marketing pyramid program with promises of a cure, remember the following:

1. We have FMS, not brain damage.

2. We have choices. It's your body, you have a right as to what happens to it. You have an obligation to take care of it to the best of your ability.

3. Do your OWN research. Never just take someone else's word for it, especially over the internet! For example, I could create a fake profile right now and make myself a PhD, MD, Homeopathic Super Scientist, a Life Coach with a double Masters, or whatever else I wanted to be. But, for all you would know I could be some sleezy little man, sitting in a room with multiple computers, scamming multiple people for millions of dollars. At the same time I might be cutting splinters out of my desk and selling them on eBay as relics from the REAL cross of Jesus! Never blindly give anyone authority over you or your body. There are very few people that get my respect when it comes to my body and my health.

4. If you are on ANY prescription medications, don't start any supplement without clearing it with your doctor first. Doctors spend a lot of time and money in school and take examinations to obtain their license to practice medicine for a reason. Your doctor is working for you and there should be an excellent line of communication with him/her. Unless approved by the FDA, you have no idea exactly what is contained in that supplement you are getting and neither will your doctor. This means the possible interactions are unknown.

5. There is a big difference between controlling your symptoms and a cure. About the end of July every year I start to wonder if maybe they diagnosed me incorrectly, then the weather changes and I realize that I am wrong. I still have FMS, my symptoms are just not as bad in the heat of summer.

6. Remember, living healthy is different from "cured". "Healthy choices" means something different to everyone. So listen (or read) carefully when someone is talking to you about healthy choices regarding your FMS. Just because they are offering healthy choices, that does not necessarily mean they are after your money or trying to scam or cure you. Sometimes you can learn something new that will help you to feel better or gain more control over your symptoms without giving up a dime. We can only read actions we don't know hearts. Would you like to be attacked and criticized unjustly? Of course not, so just be careful not to jump the gun by throwing the baby out with the bath water. No one can hurt you if you are using your brain and are aware of what to watch for. You might be angry, that's okay. It's what you DO with that anger that is either going to make you look like a raving lunatic, or someone with strength and dignity.

So I choose to be SMART, be KIND, be RESPECTFUL. Will you join me? Even to the people who come into our world trying to sell us products or services to cure our FMS. t is my opinion that they do so at the expense of their reputations. The truth will come out eventually and by knowing what to look for and doing your research, you will protect your health and your wallet.

Blessings and good health!

Bobbie

© Robynn “Bobbie” Dinse / Bobbie’s World Blogs
Please note that this short story is copyrighted and should not be reprinted in any form without permission from the author
Feel free to link to “"Bobbie's World Blogs"
Thank you!


Tuesday, October 20, 2009

Dave Ryan - Think Before You Speak

Originally Written:  Oct. 20, 2009
Vol. 1, Issue 8

Dear Friends,

Earlier this month [Oct. 2009] an on air radio personality, Dave Ryan, Twittered a comment that "People With Fibromyalgia Should be Shot". I would like to stress that he has since apologized; however, I have developed an unexpected resolve to bringing awareness to FMS and other invisible illnesses. I hope to help educate the healthy world how these diseases can impact a person’s life. So, in this blog I have included a copy of my email response to him, as well as two links, one is to Jen Reynolds' video response to Dave Ryan and Clear Channel Communications, as well as a link to my video, which exposes my story to the world.

Let's just hope that more people are compassionate and understanding and I don't find myself shot the next time I leave a plane! My last flight was horrific and I had to be helped down the skyway.

On a side note - Dave, thank you for the apology. I should also thank you for bringing attention to a disease that is so commonly misunderstood. Perhaps now people will think twice when they hear the word Fibromyalgia, and instead of scoffing, they will stop and be thankful for their blessings of good health.

In that regard, here are the links to the videos:


http://www.youtube.com/watch?v=TLsqxImKI5c
(Jen's video)


and

http://www.youtube.com/watch?v=sNKj7hmTgX8
(my video response)

Finally, this is my personal email to Dave Ryan.


Dear Dave,

I would like to share a little about myself with you. I've heard a lot about you and thought maybe you should learn a little about me.


I'm presently a member of an all ladies drill team. Well, to be more specific, I'm a small part of a 2 time/back to back National Championship Drill team. My son is a member of their Advanced Youth team, which also won the Youth National Championship this last June in Tyler, TX. 

Since I cannot ride hard on back-to-back days because of my health, in fairness to the team I have chosen to provide ground support at large competitions and I ride with the team in parades to help raise money for the trips to competitions. I'm always there in the background, providing support to all the ladies who have accomplished what no other drill team has EVER done.

Three weeks ago, my son and I rode a 16 mile trail ride fundraiser called "Hooves for the Cure" to raise funds for breast cancer research. There would be two different groups, a two hour ride and a five hour ride. We took the long ride. We were told to go 16 miles in 5 hours we would have to "trot" a little. Well, that was an understatement. We had to flat out lope and gallop a large portion of the ride. We started out with 38, many dropped out in the middle, but not me, not my son. We stayed and rode the whole 16 miles, walk, trot or gallop. I was going to finish it for the memory of a former drill team member, in fact the horse I ride once belonged to her before she died from cancer the year I joined. Also, we rode for a former co-worker who survived breast cancer twice and now is 10 years down the road and still cancer free. We rode fast and hard, the greatest way to ride! I loved every moment of it and let myself feel the freedom of riding across the countryside with the wind in my hair. At the moment I felt truly alive, free, and perhaps pure joy.

All the while on this trail ride, I was thinking wouldn't it be nice if something like this was done for research of FMS/CFS/Lupus? All the invisible illnesses that we still don't know how to cure?
You need to know even more about me. I am a survivor as well. Not of breast cancer, but I have survived a serious car accident that took everything away from me in 2002. I had a severe neck injury and now I have a plate fused in my neck. I thought once I was done with that surgery I could get back to living, but that wasn’t the case. There was this disease that I had no knowledge of. Two years later, I developed FMS as a result of that devastating auto wreck. I lost almost everything, my career, my health, my friendships at that time.
I rebuilt a new life in it's place. That's when I first met the Rangerettes and began to pursue my passion for horses. If you see me on a plane, you won't know I have FMS. But if you want to say 'hi" or exchange a smile or kind word, you can recognize me by my western boots and the Championship belt buckle I may be wearing. The buckle was given to me by my teammates out of appreciation for my hard work and support at the competition. Even they did not know I have FMS until this year.

I'm not going to slam you for your comments. I just wanted to put a face on the disorder. We all say things in the heat of the moment without thinking.
Were you thinking? Will you think now? Please, please help us turn this into something positive for the millions of FMS survivors who are NOT as fortunate as me. Who did not get the care they need or are lost and don't know where to turn. We need to raise awareness in a positive way. Can you help us with that?

Would you care to?
Please think of me often. I'll be the one riding the big black horse, knowing that tomorrow I'll pay for it, but living life in that moment.
Thanks, Dave.
Sincerely,


R. Dinse




To all my readers, I hope that this finds you well and looking forward to a blessed holiday season. If you take anything away from this blog, please let it be empathy and compassion for others. We can't know someone's circumstances unless we are walking in their shoes.

Blessings to you all!


Bobbie
© Robynn “Bobbie” Dinse / Bobbie’s World Blogs
Please note that this short story is copyrighted and should not be reprinted in any form without permission from the author.  
Feel free to link to "Bobbie's World Blogs"
Thank you!