Showing posts with label Disability. Show all posts
Showing posts with label Disability. Show all posts

Friday, June 18, 2010

The Positive and The Negative….Bearing Our Cross

Vol. 2, Issue 2

Hello My Dear Friends!

I hope you are all doing well!  Now that we are in mid summer, I’ve been enjoying a reprieve from the endless irritation of cold air, bitter wind chills and all those other horrid things that winter weather causes, which produce very real pain for me. Yes, the disease is still there, but at least it is not affecting me (with the exception of my migraines) and I have been able to get out and spend wonderful days with my horses, my beloved family and enjoy the fellowship of new friends!

Which brings me to the title of today's blog.  In the past year, our family has been through some very real trials and tribulations.  We all have our crosses to bear and sometimes I think that we all get to a point where we look up and wonder, “How much more can I take?”  Well, I’m learning that apparently, I can take a lot.  There is a passage in the Bible that I stumbled across (or rather I like the phrase, God turned the pages of my Bible) and it is quite relevant to the situation.

Philippians 4:8 - Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable, if anything is excellent or praiseworthy, think about such things.

How is this relevant? Well, I believe that even when all around us we are surrounded by fear, ugliness, mean or unfair treatment, the moment we allow ourselves to take our focus off of the things mentioned in this passage, we open the door ajar for Satan to get in and poison our thinking. We get bitter, angry, and critical of others. Then we become insecure and ultimately, very unhappy.  We may start to feel the need to control things or more important, the negativity becomes our main focus.  Then what happens?  We take our eyes off of what God’s plan is for our lives and try to make it on our own.

Well, I believe that we are never the One that is truly in control.  God gives us choices in our lives.  Sometimes the right choice isn’t black and white, we don’t know which choice to make, but if we make our choices knowing that we carry our cross by God’s GRACE, that HE is there all along holding us up, when the choices are not clear, He will guide us to where we are suppose to be.

I believe that my journey over the last 18 months has been truly one of God preparing our family for something that we don’t necessarily understand; at least not at this time.  As time goes by, we will look back and be able to see what it is that He is trying to teach us, or perhaps wants to show us. Perhaps not.  Perhaps it isn’t about us at all.  Perhaps it is about HOW we carry our cross, how we handle the trials that come our way.  I don’t have all the answers.  I don’t know how we will manage, what will become of my husband’s health, or my own.  I don’t know what tomorrow will bring, but the LORD doesn’t want me to know that.  He wants me to trust in Him….TODAY.  He wants us all to look to Him at this very moment, each and every moment in time,  one by one. The Bible tells us:

Mark 8:34-38 - "If anyone would come after Me, he must deny himself and take up his cross and follow me.  For who ever wants to save his life will lose it, but whoever loses his life for Me and for the Gospel, will save it.  What good is it for a man to gain the whole world yet forfeit his soul?  Or what can a man give for exchange for his soul?  If anyone is ashamed of Me and My words in this adulterous and sinful generation, the Son of Man will be ashamed of him when He comes in His Father's glory with the holy angels"

Our time on earth is our time of Grace.  I tend to believe that life is a series of peaks and valleys, good times and bad.  We just need to remember that what really matters is our Soul.  While still on this earth, I have faith that the Lord will keep His promises and care for us as He does the lilies of the field and the birds of the air.  I do know that when my time comes and I return home to be with Him in heaven, I can look back and say, “Now that wasn’t so bad, was it?”

I’ve thought a lot of my father lately and the many times he gave me very simple and concrete advice.  He was a wonderful man, I miss him so much and He was and still is my hero.  If anyone had a good excuse to be angry or bitter, it would be a person who became paraplegic at the age of 15.  But that wasn't his way.   He overcame many crosses of his own, but when he passed away well into his 60's, it was very clear that he lived his life looking at the positive things and never let the negativity of others stop him or prevent him from enjoying his life.

So my message today would be that no matter what struggles you carry, remember that you are never alone in this world.  My husband and I have a rough road ahead of us because of our health and the consequences it puts on us financially, we know that well.  But we also know that God has put wonderful people in our path to lift us up when we are down, and more important, that He has the plan and it is always for our own good and to God be the glory!

For all my friends who fight chronic illnesses, don’t give up hope.   Don’t worry about those that would bully you or don’t understand.  Look to the higher things in life.   There is a purpose for you.  No matter what we must endure, God always has a plan that is much better than our own.

Many blessings to you and it is my hope that you all enjoy the rest of the summer!

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!

 

Sunday, June 21, 2009

A Father's Day Tribute, A Daughter Remembers

Originally Written:  June 21, 2009
Vol 1, Issue 6

Happy Father's Day, Everyone!

I hope you all had a restful and enjoyable week. I've been thinking a lot about my Dad, it’s only normal. Who wouldn't be thinking of their dad on Father's Day? I recently lost my father. We all knew he was in his last years, but it was sudden and very unexpected. I gain comfort knowing he is in heaven with Christ Jesus and I will see him again someday. I still miss him terribly, as does my step mom, Diane. To him, she was a gift that he had waited for all his life. It was mutual, they brought out the best in each other and his death has left an empty hole in her life and all those close to him. The 16 years they shared together were precious and their love touched all of us, their family, friends and co-workers alike.

He was an amazing man and lived well into his 60's, which given his circumstances was a miracle in itself.

If you have been reading my stories, you know that my Mom and Dad were both confined to wheelchairs in their teenage years. As a small girl, I recall my mom was the one to explained things to us about their physical circumstances. You know all the little questions we had like "How? What? Where?" and of course, "Why?" Dad's answers were never clear to us, at least not at that time. He would always say things like, "So what? Why not?" or "What does it matter?

One beautiful Saturday afternoon, while riding horses at my uncle’s place (I was about 8 or 9 years old), Dad asked if I wanted him to ride with me. I quickly responded with "But, you can't." Whoops! Dad asked me "Why not?" He was persistent...he repeated that question at least ten times until I started opening my mind to the possibility. Then I asked him the right question: "How could we do that?" He then gave me his ideas of how it could be done. I think he could have done it, too. No doubt in my mind. Let’s just say it involved a pulley system to get him up there, ropes to help keep his legs in place and some very imaginative ideas!

But, Dad didn't really want to ride that day. I was afraid to ride bareback and after galloping back across the pasture, I had asked for the saddle. He was trying to teach me something more important. In less than ideal situations, I need to look for other ways of overcoming challenges and doing things. Not assume that I can't do it because it might be hard or frightening. I needed to challenge myself.


Why not? So what? What does it matter?


You could sum up Dad's level of determination by those few short questions.

Dad never talked of his accident. What little detail of Dad's auto accident that I can recall (as it was told to me by mom) is that he fell asleep while driving his car (or truck...I never knew) on the rural highways that wind through far Northern Montana. He was apparently traveling into town when this happened and drove off the road and down into a steep ravine. I'm not sure if he remembered it, but he was trapped in his car for hours, upside down, with a broken back. He would never walk again and lost all feeling from the waist down. Dad never spoke of this experience with me. The one time he came close, he instead spoke of my grandmother, his stepmother, the woman he considered lovingly, Mom.

I recall Dad saying that if it wasn't for her, he would have given up and never done anything more with his life. She was the one that kept pushing him forward. She never allowed dad to say he wanted to die, although he felt like it at times. She said he had a future. She said, "There is nothing you can do about it now, it can't be changed, so don't waste your time worrying over it."

She was so right. No amount of worry or regret can change yesterday. We have precious little control over what happens next.

Like Grandma, Dad didn't give up either. He didn't stop living and waste away as a recluse inside the same log cabin in which he was born. He spent well over a year rehabilitating. A lot of that time was spent far away from home, away from the large family and the ranch life he was comfortable with. He eventually learned to accept the life that had been given to him. After rehabilitating and getting his High School Diploma, he went onto college and received his degree in accounting and business management. He wasn't going to sit by and take disability and never do more with his life. That wasn't good enough. He wanted to LIVE his life, not have it handed out to him or decided for him. So as his life began to unfold, when challenges arose, it was clear why he carried the mindset of "Why not?"

He eventually married my mom and together they purchased their first home. Now we had some unusual things in our home to assist in keeping mom and dad independent. We had what we named "reachers", nothing more than an oversized pair of salad tongs to reach the things on the top shelf of the cabinet. We had ramps in the front of the house, the garage and out the back porch. My dad's car (yes, he was a licensed driver) was lovingly named the "Green Lizard". A 1969 green two door Ford Fairlaine. I loved that car, hated the black leather interior in the summer, but we took many family vacations and road trips together in that car. Now dad had to make the normal and necessary changes. He built a sheet metal ramp to help get his chair in and out of the back seat. The ramp made it easier to pull the chair out so it wouldn't get stuck in the foot well. My sister and I fought over who sat on what side. If you got the driver’s side, you sit with your legs crossed during the entire trip. If you get the passenger side, you can get your feet on the floorboard. It worked well until we started getting to big and then it was time to make a change. We then graduated to a family van, which of course had to be modified to allow dad to keep as much independence as possible.

Now to modify the van in those days meant taking an empty cargo van, moving the seats into the back for the kids, attaching hand controls, an extended steering wheel and wheelchair locks. Our neighbors backed the van into the front yard, my parents wheeled into the back of the van from off the front porch, transferred into the van seats that were factory equipped, we loaded up the wheelchairs and headed for St. Louis, the closest place at that time where we could have a wheelchair lift and the rest of the modifications installed. At that time, we were talking about a six-hour trip in the hottest part of the summer. Dad was convinced everything was in order, all would be well and we would stay in a nice hotel off the Mississippi River while the modifications were made to the van. Modifications would be a cable supported lift off the side of the van, allowing my parents to ride up and down into the van with ease. From now on, there would be no need to transfer from their chairs to the car seat. Back then they did not have the motorized chairs they do today. They would be able to ride and drive from their chairs. Ah yes, Dad's ultimate machine would allow him even more independence! He named it the “Copper Coupe” because of it’s brown copper color. Dad named all of his cars, I never found out why.

There were a few "concerns" the neighbors had before we ever left the house. First of all, dad and mom would be stuck in that van until they reached their destination. Dad reassured our good neighbors that we had people waiting for us to arrive and they were supposed to help them get out of the van, check us into our hotel and then take the van to the shop for modification. No sweat, right? We had a brand new van, new tires, and a CB radio if heaven forbid something did go wrong. That way we could call for help. He reassured them that we would be fine and off we went. Fully armed with lunches, snacks, water jugs and Dixie cups. We were ready for the adventure!

Sounds like a piece of cake, right? WRONG.

Everything that could have gone wrong on that trip did.

Problem No. 1: Well, we hit St. Louis at high rush hour. I remember sitting in one place on the highway for what felt like hours. It had to be 100 degrees outside and at least 110 in the back of that van. We were late getting to our destination. Hours late. This meant that the shop closed before reached our destination. And it was closed for the weekend. So Dad decided the best course of action was to go to the hotel and see if we could check in and find someone kind enough to help with our problem.

Problem No. 2: Well, on arrival at the hotel, my sister and I were tasked with going to the front desk for a manager to come out and speak with our dad. The hotel had lost our reservation and they were booked. So we then had to find new accommodations and fast. Remember, this was back before cell phones, or even roadside phones that you could use while still in your vehicle. I started wondering myself how dad was going to get us out of this one! We drove around and found a nearby hotel. Dad caught the attention of a passerby who went into the hotel and asked if they had rooms available, he returned with the good news that yes; they could put our family in a room. So we had a place to stay, but this brought up the next problem.

Problem No. 3: How to get mom and dad out of this van. With our help we brought dad’s wheelchair out of the side door of the van and around to the driver’s door. Remember, this was a 70’s model full size cargo van. It was a LONG way to the ground. To my mother's horror, he jumped from up on high, down into his wheelchair. Hit his target, no harm, no foul, no problem. He was quite pleased with himself! Then it struck mom, she would have to do the same. In tears she cried out that no way was she going to do that. NOT. GOING. TO. HAPPEN. The next twenty minutes were filled with a lot of words I'm not supposed to use and was told to cover my ears. I could still hear what was going on and let's just say she let my dad know that she was displeased with him and sick of all his adventures and ideas. In between the "I hate you for doing this to me" and the "I'm not doing it, I'm not!" My sister and I sat on our suitcases thinking about how much fun the pool would be and how hungry we were! Then my dad had enough and finally said calmly, "You don't have any other options, you will be fine, the kids are here, now get your ass out of the van." She gave him one last cussing and then landed square on her backside in her chair. After catching her breath and getting settled, she didn't talk to him for the rest of that night. But for the rest of us, it has made for an entertaining story and a fond memory that I will share with others for years to come. Ah yes…my dad and his determination to be independent, his idea of comfortably “normal”.

We spent the rest of the week at the hotel, watching the boats on the river from our 12th floor balcony, swimming every day and spending time as a family. It was a really great vacation. Filled with the type of relaxing moments that you hope you can have with your children, once you have grown up enough to look back and realize just how good you had it as a kid.

This is just one of many examples of how my dad took the every day normal tools of our life and modified them to work for his life. So he could have that same freedom of choice that all able bodied people are entitled to have. I have mentioned that dad had many gadgets to accomplish this. One of my favorites was his lawn mower.

Now, there were so many things that Dad did that you just would not expect a paraplegic to attempt. It would be too hard, take so much more work...just pay someone and save your energy, right? Nope, no hired hands for my dad. Yard work and mowing the lawn was one of those things. My dad had a green riding lawn mower that yes, he modified. He ripped off the seat and replaced it with a regular bucket seat from a car. Never mind the bucket car seat was bright burgundy leather/vinyl material, it worked for him. He took off the steering wheel and replaced it with bicycle handlebars, carefully welded to the shape he needed to reach. He added foot rests for his legs, designed a "stop and go" bar that attached to the throttle so he could control this function by hand. It was the most ugly lawn mower known to man, but it worked. Every Saturday he was out in the yard, without fail.

We had a system when Dad mowed. Take water out to dad often and listen for the mower to stop. If it stopped anywhere but in the garage, time to go rescue dad. It did break down and often, but he would doctor it back up and get it through another season. Mowing the lawn wasn't the end of the job. Dad would then rake and bag his entire front and back yard. Why? When for a small amount of money someone could do it for him? Well, he wanted to be independent. Just like everyone else. It was his perception of "normal" that he could be happy with and accept. A well tended yard, complete with the trimming, done by his hand. What a sense of satisfaction he must have had at the end of the day!

Eventually my parents divorced, Dad moved away, eventually landing in Denver many years later. Dad and Diane purchased a nice home together and gave the yard work over to a young boy down the street. But, Dad’s green thumb prevailed so he also hired someone to build an elevated garden complete with irrigation systems, so he could grow his tomatoes, carrots, green beans, squash, you name it. His garden was his pride and joy and each time we visited him we loved going out to see what veggies were ready for picking. He had a gift for gardening and grew some of the sweetest baby carrots I've ever eaten. It had become part of our trips to Denver that we all looked forward to.

Finally, I want to share one of my fondest memories that I have of my Father. It was dancing with him at his wedding reception after marrying Diane. Yes, DANCING! He would get out there with his chair and "get down" for lack of a better adjective. Now, I'm a horrible dancer, but that night at the club he said to me; "Please honey, I want to dance with my daughter on my wedding day." How could I refuse? I had the time of my life. Once our dance was over and the slow dances began, Diane took her place on his lap. They shared a very special moments on the dance floor that night, and all the people in the club took notice that there was something different and very special about him, about both of them. Not having legs that worked did not mean anything to him or her. He showed the world that his disability wouldn't stop him from having the life he dreamed of. I cried tears of joy for my father. I was both incredibly proud and happy for him that he had found his place in this world and found someone equally as special to share it with.

The last years of his life I think were some of his happiest. He and Diane shared such a wonderful relationship. Together they shared many experiences that he may not have had if they never met. They went hot air ballooning, snowmobiling in the moonlight and took many more trips across this great country. The last time I saw him was when he came to visit for my oldest son's high school graduation. Their van had broken down and needed to stay at the shop for repairs. Problem? How were we going to transport my dad two miles from the dealership to the hotel, without a wheelchair accessible van. Not to fear, Dad had a plan. He told me on the phone, "No problem, I have a ride, I'll meet you at the hotel." Okay. My family hoped in the car and headed toward the hotel. All of a sudden, in the dark I see this image on the back of a flatbed truck. Just behind the cab, holding onto the light railing, was proudly perched my Dad, in his wheelchair, happy as a clam. He was waving to people, there were people honking and waving back, he was having the time of his life! He said the breeze was great and the view was even better! We got him to the hotel and unloaded Dad the one man parade and then I laughed all the way home. It was typical Dad. No fear, ever. Just go with the flow. There is nothing you can't overcome by God’s Grace and a set mind!

What an inspirational human being he was. I was the luckiest daughter in the world, because I was able to share his life!

Even if you don't have a disabling disease, Dad's life lessons were far reaching into all areas of life. We just didn't know it as young kids. Every person who met him, liked him, respected him or loved him. He was always outgoing and full of humor.

On a personal note: Dad, I miss you terribly, but you have left me with so many positive memories and examples of courage and strength. Sometimes when I'm down with my own disease, I wonder how you managed. It’s then I remember that I have to keep going and I CAN keep going. I have choices. I need to make them and go forward, even if it's just a little bit everyday. Although I miss our long talks, I'll never be without all those wonderful memories that you have given to me and your grandchildren. I know we will be together again someday and I want you to be proud of what I have accomplished, too. I won't give up; I'll fight this disease every day and get my life back in balance.

To my readers, I hope that you will gain strength from what I've shared of my father. There is so much more to tell. I could write for hours. Even in his death, he never lost his sense of humor or his practicality. He wanted his ashes spread on the ranch in Montana, under the same tree that Grandpa and Grandma asked for their ashes to be spread. At his memorial brunch, held in his home last spring [April 2009], Diane took my hand and walked me to the pretty oak box containing his ashes. It was engraved with the following: "Now wasn't that cost effective?"

Save me a dance in heaven, Dad. I'll be there in God's time.

Your Loving Daughter



© 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!

Sunday, June 7, 2009

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!

Tuesday, June 2, 2009

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
Feel free to link to “Bobbie’s World Blogs"
Thank you!

Sunday, May 31, 2009

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!

Saturday, May 30, 2009

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 toBobbie’s World Blog’s  
 Thank you!