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Blessings,

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

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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!

Horses, Friends, Teammates and Dedication. Our USEDC Success Story

Originally Written:  July 22, 2009

Vol. 1, Issue 7

Welcome back, Everyone! 

I hope you are all well and enjoying your summer!  I’ve been away from my writing lately as I’ve been out of town and recovering from our exciting trip to the United States Equestrian Drill Competition - the National Championships held near Lindale, Texas.

Since the beginning of February, our team members have braved freezing temps, walked through pastures to catch horses in sub-freezing wind chills, loaded them before we changed our minds, then headed to some nearby arena, (hopefully indoors) to get to drill practices so we would be “up to speed” for Nationals. Eventually, Old Man Winter would say his goodbyes and the cold wind would give way to high heat, humidity and sunburn.  Our ever-faithful horses performed like troopers.  They probably adjusted faster to the changes and the physical demands with far less complaints than we did.

Cold temperatures are my worst enemy since my diagnoses with FMS.  There were some practices that all I could do was sit in the chair with a blanket and pray that when I got back up, my muscles would actually do what I told them to do.  Riding in those temperatures for me was out of the question.  Those times were strictly for Peyton and done out of love for him.  I would watch my son ride from the sidelines.  On these cold practice days, I would pay dearly the next day.  The knowledge of hot temperatures just around the corner kept my hope alive and I persevered.

Why do I put my body through this?  Well that’s easy.  I love my son dearly and I would do anything I could for him.  I have a deep passion for horses and have all of my life.  Truth be told, I love this team.  Some of the members are so dear to my heart I couldn’t even begin to tell them how I feel.  I just don’t have the words.   So I keep that inside, like a safe treasure only for me to hold.  Many of the veterans of this team I consider mentors, not just to me, but true examples for new riders of all ages.

This year there was a lot of excitement, new friendships were made and great times were had.  While there have been groundbreaking changes and thrilling successes, it hasn’t been an easy year by any means.  It has been hard for many of the people on the team.  Some members have been overworked, some are riding with injuries, and all of us were struggling with our children's church programs, school schedules and conflicts with performance schedules.  There were times when tempers were short, but the teams pulled together as always, to do what they do best, ride the drill.

I joined our drill team in 2005 when I was invited to ride in a parade late in the season. I loved it so much that the next year I purchased my horse and continued riding with the team in parades when I could.  It was that next season that Peyton also fell in love with my horse Filly and with a little encouragement he joined the youth drill team.  It only took one practice and he was hooked, just like his mom.

Since I rode in that first parade, there have been many changes in our club.  I have watched a team that was struggling to get enough people to win parades, loose a few teammates, and then come back strong the next season with 10, then 12 drill riders, and as of now we have 16 official riders, with several riders lined up eager to fill backup positions in a moments notice.  We have had to turn people away because there just has not been the room. 

We have also had fabulous blessings.  This team was the first ever to win two back-to-back National Championships.  In addition, the team won three consecutive Rodeo Division 1st Place Titles, and two consecutive Ride of Champions, quest for the SuperCup wins!   We have come a long way in those five years.  A team once severed almost in two, pulled together and came back stronger than ever.   Why?  I think it’s love and respect.  Love for the horses, love for the drill.  Respect for each other.  I believe that is the secret to the success of this team.  They rise and fall TOGETHER!

We added a youth team last year so our kids could ride instead of sit and watch their mothers and grandmothers compete.  They did well that first year with 8 members at Nationals and 10 at Regionals.  All along there would be sacrifices.  Equipment is expensive, uniforms and hats are costly, gas was almost $4.50 a gallon and pulling a trailer full of horses all over the country doesn’t get you the best gas mileage.  There were hotel rooms to pay for, stall fees, shavings and in some cases you had to pay just to get in to the event you were riding.  Meals on the road add up and take a chunk out of your pocket book.  But, every child deserves something to pursue.  I loved every moment I spent with my family as we drove to events and watched performances.  I did a little riding myself.  Last year I carried the team flag during grand entry at a local rodeo and had the time of my life.

This season [2009], we have been blessed with so many eager young children that we were able to put together a youth novice team of 8 and a youth advanced team of 12.  These children are the future of drill.  They will be the ones who keep the sport alive when we are too old and broken to perform at such a demanding level.

Our Novice team came in an impressive 3rd place at Nationals.  The Advanced Youth team captured the Advanced Youth Division Championship that eluded them last year by only a few points.  There were tears of joy, exhaustion and pride from both parents and children.  This is a family sport and by the time you get this far into competition, well, you become somewhat of a family.  I’ll never forget the smiles on the little faces of the 7 year old girls as they proudly carried their ribbons to mom and dad.  I still tear up when I see the three ribbons won by my son’s team, and I think of all the other teams that worked just as hard and are just as deserving of that respect.

While I would have loved to ride with these wonderful ladies on the adult team, I know that my disease will not be conducive to this sport.   That is okay with me.   It was in the beginning and it still is okay.  It’s okay for the same reasons.  Love.  Love for the horses and the sport.  I’m perfectly content to ride my horse on my own and enjoy the parades. I cheer the team on from the sidelines, just as the rest of the families do, and I love it just as much.  I also get tremendous joy out of assisting the team as part of their ground crew.  From water, to holding horses, to switching out tack, you name it I’m there to help out!  I want these teams to succeed!  If I can help in some small part, it is my honor for these wonderful families.

It is my hope that someday my disease will somehow be put in check so I can compete and enjoy that same thrill and excitement of success.  But, until that time comes, there is enough love in my heart to go around and be thrilled for all those out there giving their best and leaving their heart and soul out there in the arena dirt!

See you all next year!

Bobbie

[Writer’s note:  As of June 2011, the ladies team has won the Ride of Champions three out of the four years it has been in existence.   They hold three Division 1 National Titles and 3 Rodeo Division Championships.  The youth team returned to capture the Advanced Youth Division 6 Championship again in 2010.   The new youth team, a mixture of a few advanced and a few very young riders received ribbons and placed very well considering the age and experience they have had.]

© 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.   

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Thank you!

Sorry, I Just Can't Make It Today

Originally Written: June 7, 2009

Vol. 1, Issue 4

Good Day, Friends! 

Today I’m touching on a couple of different topics that surround FMS.

1. Problems maintaining a schedule.

2. People who respond to our illness in cruel and insensitive ways.

We have all encountered people that say horrible insensitive things because they don’t, understand or believe that you have a serious illness. Some of these people may even be in our own family. They probably think “We look normal on the outside so how can we possibly be so sick that we need to be bedridden?” Or, “How can you possibly be unable to work? You say you are in pain, but we can’t see it so how can it be real?”

To us it is very real. Sometimes our pain is so bad we can’t think clearly or even get out of bed. The question these people constantly ask is, “How can we be fine one day and on the verge of hospitalization the next?”

For us it is very simple. We suffer, most often in silence, because it is easier to keep it to ourselves than it is to explain our struggles, pain and loss, just to have someone respond insensitively.

One of my biggest obstacles with FMS and migraines (my other major disabling condition) is not being able to schedule things in advance. I can never be certain that I won’t have to cancel at the last minute because of a flare or a migraine. I know that we all have been in this circumstance and it can be very frustrating. Especially if the person you are canceling on doesn’t understand your situation.

There have been times that I’ve rescheduled appointments more times than I can count. Now, if I cancel on my headache specialist? No problem. Cancel on my pain specialist? Again, there is no problem. It’s to be expected. Neither of my doctors want me to drive during a migraine or while I’m taking medication for breakthrough pain.

My biggest problem is always with the dentist. Dental appointments 9 times out of 10 trigger a bad migraine for me. All that buzzing around in my mouth or even just a routine cleaning sends me home sick. Many times just the anticipation causes enough stress to trigger a migraine, resulting in another rescheduled appointment. Of course they don’t get to see me with my head in the toilet so to them it just a bunch of drama to get out of keeping my appointment.

My last dentist had what I called the appointment Nazi’s. They called over and over and over and over to reschedule. If I had a morning appointment and had to cancel, they said, “Well why don’t you come in this afternoon?” Okay people. Most of us with severe chronic migraines know that you’re pretty much worthless for 24 hours AFTER the headache breaks. At least I am. My triptan makes me feel like I’ve run a marathon and the last thing I feel like doing is getting up, taking a shower and going to have some person dig around in my mouth, just to start the headache back up again.


These young girls just didn’t get it. No matter how many times and ways I tried to forewarn or explain. My last appointment I had to cancel they had the audacity to tell me to either come in or find someone to fill my appointment. I was furious. My husband was also outraged and he came home from work, picked me up, we went into the dentist’s office so they could see just how sick I was. My husband then proceeded to tell them they could go pound sand before they would EVER treat anyone in our family again. They lost four patients that day. The dentist, which I had seen since the age of 12, apologized profusely and said that I could just call on a day where I felt up to it and they would fit me in. I thought that sounded like a great plan. So we headed home, all the while I was struggling to keep the contents of my stomach IN my stomach. I assumed we had reached an agreement, although my husband stood firm that he and the boys would never go back to that clinic again.

A few days later I received a letter in the mail saying that they had the highest standard of care for their patients and because of this they were dropping me as a patient. HUH? What was that suppose to mean? Some poor little appointment clerk probably got a firm talking to and when I didn’t call within 3 days, she decided I could care less about my teeth and that I was not “good enough” for their practice. So, in total, the clinic lost a total of 5 patients in 3 days time due to one appointment clerk’s behavior. The dentist doesn’t get a pass either; after all, he signed the letter.

To this day I regret not responding to that letter. I was so upset that I was afraid I would get into a screaming match that would result in me needing to ask for forgiveness on many levels. So I let it go. I will not mention his name. I firmly believe I would be wrong to do so, as it would violate my Christian principles. The Bible says, “Vengeance is mine, says the Lord.”

We all have to struggle with feeling semi-normal one day, then the next like we are near death. I try not to schedule morning appointments if possible because that tends to be the hardest part of my day; it is for most FMS patients. I don’t make commitments to serve on the board of my drill team; I always make sure there is a backup for any drill position I may ride…which only started this year [2009]. I have learned that I must “come out of the closet” so to speak and tell my friends that I have this disease. Some of them get it, some of them don’t. But that is their problem, not mine. It goes to their character and anyone who chooses to elevate themselves above another people on the basis of health is discriminatory and cruel. I know, those are strong words, even judgmental. God tells us “Judge not lest ye be judged.” But, we can see a person’s actions and if those actions fly in the face of God’s command to love one another, I think a little extra caution is advisable before opening your heart to someone like that.

My friends keep up the fight. Defend your right to be treated like a human being even though you fight this terrible disease. Remember never to give up your dreams, and never, EVER let someone else make you think less of who you are because of Fibromyalgia or any other invisible illness.

Have a blessed week!


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!

I Have FMS, Now What Do I Do???

Originally Written:  June 2, 2009

Vol. 1, Issue 3

Hello Everybody!

Today I want to take a moment to discuss an issue that affects a lot of people that suffer with FMS and other disabling conditions. Before I get to that, I want to share a little of my story with you.

Prior to my car accident and being diagnosed with FMS, I was working 40 + hours a week and was the major bread winner for my family of 5. My day started at 6:00 AM with taking the kids to the sitter and driving 45 minutes to my job. After working a full day, I would return to pick up my children, drive home, make supper, clean up the dishes, spend some quality time with the boys, bathe them and tuck them into bed. The weekends I did the major house cleaning, yard work, tended to the flowerbeds and washed the car inside and out. 

My oldest boys are one year and one week apart so they played baseball on the same team. I NEVER missed one of their games. Even after all that, I managed to sing in the choir and play a musical instrument during the service once or twice a month. I look back at those days with a lot of joy and happy memories. Although I was tired, it was nothing like what I experience with the FMS. Now that I have this disease, I’ve given up a lot of things I once completed with relative ease.

I went through a long grieving period of the life that was lost to me because of FMS. BUT, that doesn’t mean my life was over, it just had to change and I had to adapt. Not to mention, my disability check is a fraction of what I use to make.
Now, I’m still one of the very blessed few. My husband has a great job and is able to support us with his income alone. He does have some health issues of his own and that frightens me on several levels. 

• I love him and don’t want to be without him.
• If I were to lose him, I would lose everything, my home, cars, everything material. 

It can be terrifying at times. We have life insurance, but that would only go so far. So, I try to live each day to the fullest by cherishing every moment; however, when I’m having a severe migraine or a bad flare all these worries really get to me.

What I have learned is that I must trust in God to provide for my daily bread and to take things one step at a time. Some Fibromyalgia patients have more severe cases than others and I feel for those who are suffering or confined to wheelchairs due to their pain. But I have faith that should something happen to my husband, God would provide another way for me to care for myself and my boys.
So, what I want to say to you is this: Don’t give up. You have a future and God will reveal it to you when the time is right. In the meantime take things one day at a time and trust in His plan for you. Continue to work with your doctor until you find the right mix of medication and therapy. Remember, no matter how bad your situation is, the sun will still come up in the morning! Never quit trying and never give in.
Good luck and many 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

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Thank you!

Life Doesn't End When You Have A Disability

Originally Written:  May 31, 2009

Vol. 1, Issue 2

Hi Everybody,

Today I wanted to share with you how my evening went.  Tonight we had youth team drill practice.  We have a rodeo coming up this weekend and Nationals are coming up the end of June.  I managed to stay on the horse and actually remembered all of the different moves in the drill.  Needless to say I had a wonderful time and for a few hours forgot all about this horrible disease.

As you know, I suffer from severe Fibromyalgia.  I have good days and I have bad days.  Today was one of those good days.  You couldn't tell the difference between a healthy person walking down the street or me!  My passion since I was a little girl has always been horses.  When I was young I collected the Breyer model horses because mom refused to let me put a pony in the back yard.  Go figure!

Anyway, my son and I ride with a local drill team.  Since my disease is so severe, I cannot ride on the drill team with the rest of the ladies.  On good days I can ride in the parades and I can help out with ground support during competitions and rodeos.  Where am I going with this?  Well, since 2005 I've been trying to control my horse at a lope and still be able to walk the next day.  I've managed to accomplish one of the two...guess which one!  Unfortunately, it’s only during the warm season and only on days that my Fibromyalgia is in agreement.   You all know that FMS has a mind of it’s own and what it decides to do ALWAYS takes lead role.

This year I have been asked to ride with the novice youth team in their competition this June.  I was elated but cautiously optimistic.  After explaining that there was a significant need to have a back up, just in case I was too weak on the day I needed to ride, I was told "No problem"!   So, my life long dream may finally be coming true.  Not only do I own a horse, I may actually be able to ride with the team in the drill.  I will be filling in this weekend at a rodeo, since there are 3 riders that cannot attend.  My first real live performance!  I'm both excited and terrified at the same time.  I'm sure I will be sore afterwards, but the more I ride, the less severe the pain is afterward.

It is very exciting for me and I hope that I can give others with this terrible disease hope that if they can find the right mix of medication and therapy, there lives don't have to be over.

I'm 41 years old.  I refuse to let this disease end my hopes and dreams.  Just because I may have to slow down and rest, I still have the God given right to dream and strive to reach the goals I have set for myself.

Have a blessed week everyone.  Remember to be thankful for your health.  We all don't have healthy strong bodies to lean on and even the strongest of people can have their health removed from them with one doctor’s visit.  Don’t waste your good days!   Rejoice in every day that you have and get out in the world and see God’s beauty!  It’s all around you.  All you have to do is open your eyes and your hearts and you will see the blessings that are there for you!

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 Blog’s” 

                 

Thank you!

A Word About Unseen Illness and Disability

Originally Written:  May 30, 2009

Vol. 1, Issue 1


Hello Cruel World!  Just kidding, welcome to my first personal blog!

Today I want to talk a little bit about unseen illnesses.  The people closest to me know that I suffer from severe chronic migraines and severe Fibromyalgia.  When I was 34, I was in a really bad car accident that resulted in neck surgery. I now live with a titanium plate in my neck to help support the vertebrae that were fused together as a result of damage from the impact.  I recovered from the accident just fine, but then about a year later I noticed a sharp increase in my migraines and a lot of all over body pain and severe fatigue.  I went to my doctor and after extensive testing was diagnosed with Fibromyalgia.

Many people don't know what Fibromyalgia is and because it isn't something you can see like an amputated leg or a disfiguring injury, people won't know that you have it unless you tell them.  What I have found is that the fatigue and pain slows me down so much that it does get mistaken for laziness or a lack of drive, which is both unfortunate and unfair.  I have good days and bad days.  On my good days I can function for a short period of time almost as normal as everyone else.  On bad days I may not even be able to get out of bed. 

On the up side, I try to make the most of each day and on my good days I thank God and treat them as precious moments.  They are making advances all the time in the treatment of this unfortunate disease and it is my hope that someday they will find a cure.  At the moment, there is no cure.  You treat the symptoms and hope for the best.  I think my biggest peeve is when someone says, "If I can do it, I don't see why you can't."  Well world it's like this.  If I only get three hours of sleep or push my body past my personal limits, I can end up hospitalized. Or at the very least in bed for a day or two, perhaps weeks, and maybe even have to take a steroid dose pack to control the pain and regain my ground.  Everyone has limits and we need to respect those differences.  God did not pull out the cookie cutter from his kitchen drawer when He created man and woman.  Not everyone was made the same and we all struggle with different problems, be them physical, mental or family issues, we all have hardships!  A healthy friendship is based on respect.  Without that respect, the friendship cannot flourish and grow deeper.  So before you judge someone because they cannot do what you do, perhaps you should ask yourself if there is more to the situation than meets the eye.

So my quote for the day is from the Bible. "Love one another as I have loved you."  The next time you open your mouth to say something about another person, first ask yourself:  "Do I know what is really going on in this person's life?  Am I being overly critical?  What is the benefit of my comment?  Am I lifting this person up or tearing them down?   Is it possible that I feel that I am better than this person and by stepping on their feelings, I affirm myself?" Hmmm…..food for thought.   I hope the right choice is made for the benefit of everyone involved.

Have a great weekend!

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 Blog’s”  

 Thank you!