Drawing on my experience as the adopted infant daughter raised by two wheelchair bound parents, I write inspirational and humorous true stories from childhood. I also share my own survival experiences while coping with multiple chronic illnesses. Coming from a family of survivors, I hope that as you read my stories, you will laugh a lot, cry a little, but always come away with something positive. I've only scratched the surface of telling true stories of a very unique life!
At any moment of any given day I can go online and find support groups for any illness or cause. There are MILLIONS of them. Chances are, each one I will find has all kinds of artwork, clever sayings and symbols that will direct me to take a look at any issue at hand. If the cause you are trying to bring to the public’s attention is complex and difficult to understand, it’s even more difficult to raise awareness and bring attention to your cause that is positive and productive.
Fibromyalgia Awareness is one of those very complex causes. Because no two patients have the same exact symptoms and FMS symptoms are so numerous and vary so much in intensity, I often describe FMS patients, treatments and the impact on their lives to be as unique as a fingerprint.
Not long ago, I happened to come across a comment under a piece of artwork supporting Fibromyalgia Awareness. This is what was stated:
All of us with Fibromyalgia are aware of what we go through. It's the rest of you who need to learn about how we suffer on a daily basis.
As I read this comment, something about it bugged me. I mean it really unsettled me and I wasn’t sure why. Was it that the statement was somewhat defensive or accusatory? Was I feeling anger? Sadness? Confusion? I was so unsure! I couldn’t figure it out!
I don’t mean to be judgmental of the writer. The writer had their reasons and feelings for phrasing this statement in this manner. There is no right or wrong in the statement. We are all entitled to our opinions and our feelings. Feelings are never “wrong”, they are just feelings. Emotion. It’s what we DO with those feelings that can be considered appropriate or inappropriate behavior.
One could ask themselves: “Whom was the writer referring to when they stated the rest of you?” Obviously it meant everyone without FMS, but could it be a family member who hurt them? A friend lost because of the impact of the disease? A spouse who left them behind?
Then I found myself asking another question: “What was the writer trying to accomplish?” If it was awareness, it wasn’t going to be received well. So perhaps they were not trying to accomplish anything. Maybe the writer was just hurting and this was the only way they could express themselves at that time.
As I sat pondering all these questions, the original feeling I had kept pestering me. Why does this statement bother me so much? It was literally driving me nuts. No, I’m not obsessive compulsive, but this was really getting to me. Then it hit me.
I lived in silence for a period of time after being diagnosed. I tried to hide my illness and live a normal life. But the problem was I tried to live the life I had before my wreck. I was trying to be just like everyone else. But I wasn’t like everyone else anymore. I was no longer a member of the “Healthy People Society” or as I have come to call it, the HPS. I use that acronym because it fits so many different circumstances and still applies. For example, I’ve encountered the “Haughty People Society”, the “Hurtful People Society” and the “Hopelessly Pathetically Selfish.” That’s just for starters. I’ve had many different encounters with HPS’s when it comes to my disease.
It is a fact that FMS patients live with chronic pain every day. If it isn’t pain, it may be the relentless fatigue, or migraines, or nausea, or IBS, or sleep deprivation, or severe depression, even panic attacks and medication sensitivities. All these different symptoms combine to make a very difficult disease even more difficult to manage. My point being it’s always something, and its always every day.
It was clear after my diagnosis that the days of “just push through the pain and do it” were forever gone. I can push to a degree, but not without paying for it later. Instead of pushing through the pain, I would have times where I was forced to change my plans at a moments notice. Specifically, changing plans at the most inconvenient, embarrassing, once in a lifetime or turn on a dime moments. Maybe it’s a migraine attack, or any one of the numerous other sister conditions that this disease brings with it. Whatever the source may be, rest assured, if the conditions at that moment is bad enough that I have to change plans, it means I stop and rest or I risk being laid out on the pavement.
It took a long time to wrap my head around that fact. I grieved and hid from the world for awhile, just so I could avoid being put in that position. I was so depressed and lost I shut myself away for 2 years and told myself it was safer than putting myself out there for the world to reject.
But then I realized, unless they find a cure, I’m going to have this disease for the rest of my life. Is this how I decide to handle it? Me. The daughter of the most independent paraplegic anyone could have the honor to meet. The guy who rather than miss a day of work, drove my sisters car using a crutch to work the gas and brake pedals when his handicapped equipped vehicle was in the shop for repair. Possibly the most determined man I’ve ever known. Would his daughter become known as a “VICTIM”!?!
NO! TOTALLY AND UTTERLY UNACCEPTABLE!
Things would simply have to change in my life.
Now, I’m sympathetic to the writer of the original statement. I’ve felt the bitterness of lost friends and the rejection of people I wanted to share time with, but because of a form of HPS the relationships could not survive. I’ve experienced feelings of not being “good enough.” I’ve grieved HARD over the loss of my career and the hopes and dreams that I had planned to enjoy at this stage in my life.
Used by Permission of Artist/Writer: Manuela McPhee
FMS certainly wasn’t part of my midlife crisis! I was suppose to enjoy the freedom of having grown kids! Or deal with empty nest syndrome, or share time with my sons and their girlfriends so I would be prepared for the day my boys would marry and have children of their own. I wanted to travel with my husband. Just the two of us!
It was very clear that unless I made those near to me aware of my disease, I would continue to have problems maintaining relationships and I would continue to be lonely. Which gets back to the subject at hand. What bothered me about that statement?
THIS:
"The implication that those with FMS are DOOMED to SUFFER the rest of their lives as HELPLESS VICTIMS."
I completely and totally disagree with that conclusion with every fiber of my being! This simple fact remains:
"If we do nothing.....nothing will be the result!"
My fellow FMS Survivors, how will the world ever understand us if we do not show them courage and strength in the face of chronic illnesses and devastating pain? No one listens to whiners and victims, but they WILL stand up and take notice of those who survive the pain with dignity and grace. Choose to be a survivor and never let the pain define who you are! We have a gracious and loving GOD. He will give you the courage you need to endure. This is one of my favorite passages:
"I know the plans I have for you," declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future." Jer. 29:11
In closing, this video is my story of how I eventually rebounded and fought my way back to a new life by God’s Grace. This was my childhood dream. I had never pursued it as I never had the time or gave myself the permission. Had I not been afflicted with this disease, I might never have pursued this dream and had such wonderful experiences with Filly.
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!
To My Readers….This is a very special letter written to my mother on the anniversary of her death. It is filled with memories that are very personal to me. I hesitated to put this out on the board because it is very personal and contains a lot of raw emotion. At some point in time, we all must say goodbye to a parent or a loved one who goes before us to Glory. So I decided to publish it anyway. Perhaps by sharing this letter and the feelings that can come from the long separation death brings, I could possibly help others who are grieving the loss of one they love. I hope that as you read this, you will see the love and bond that we shared. I thank you for your time!
Hi Mom,
I've been thinking about you so much the last few months. I always do at this time of year. It's so hard to believe that it has been 17 years since I last saw your face, hugged you, or smelled the perfume that you love to wear. It was always the Avon perfume; MoonWind. I use to love the little bottles that were package in a solid tube form, like a lipstick. You would let me have the empty ones because I liked playing with them. Do you remember? I thought they looked like jeannie bottles and my favorite show at the time was I Dream of Jeannie!
I tell myself every year that I can handle this month, I'll get through it no problems, it will be easier, but I just find that I lie to myself. So instead of fighting it this year, I'm going to honor you and just write to you like you are sitting here beside me having a conversation.
I never realized that one of the things I would miss the most was the feeling and touch of your hands. What they look like and how soft they were, regardless of your constant need to use them to get around in your wheelchair. They always smelled like Rose Milk hand lotion. I also remember how you spent hours braiding my hair. You always used that ugly green comb and a Tupperwear glass full of water to wet it down. OH YES., let’s not forget the “No More Tears” from Johnson & Johnson. We both remember how well that stuff worked on my hair! My hair was all the way down to my backside! I remember sitting there for hours on a small stool and a pillow, but you know something? I secretly enjoyed it. Even though sometimes you pulled so tight I though my eyebrows would stay in that position! But especially in the summer when I went swimming every day, it was easier to take care of. I don't know if I ever told you that I enjoyed our time doing girl things. I was too little to appreciate it back then.
Mom, you died so suddenly and there was so much more I wanted to say, but I just didn't get that chance. In my heart I know that you understand, you're waiting on me and taking care of the family that went before me. I close my eyes and picture you in my mind, holding my baby girl that never made it into this world. I can't wait to see you again and to see little Rebecca Dorene.
I loved spending time with you; especially our trip to Texas that special summer when I was about 11. I enjoyed listening to you tell me stories about your horse, Buster. You had all these adventures with him when you were a little girl. You use to tell me stories about your brothers and sisters growing up on the ranch in Nebraska. You just loved Buster and I know that when you developed polio at 13, it broke your heart to be separated from your family and to no longer have the use of your legs. It never stopped you from smiling though and I can prove that! I still have your high school yearbook! You were so loved by everyone around you. .My favorite picture in it is of you as Valentine's Day Sweetheart. Regardless of the loss of the use of your legs, you never lost your ability to love others and LIVE!
Making the Christmas pies - a family tradition that even my boys have learned!
You most certainly loved your daughters. Even though we aren't close as sisters, we were placed with you and dad by God, not by the adoption agency; at least not in my mind. You and dad did nurture something precious in us. You brought us up to know Jesus. "Prov. 22:6 Train a child in the way he should go, and when he is old he will not turn from it." Little did I know that this would be your greatest gift to your daughters, to know God's Word and to know our Savior. But this wasn't the only gift you gave to us. Just by your example, you taught me acceptance and unconditional love for others. No matter what a person looked like, you taught me to look deeper, much deeper. Deep into the heart and soul of a person. You taught me to ask myself, what are they like within their heart? How do they treat those around them? What they look like on the outside does not matter. Neither did the amount of money in their pocketbook.
Mom, today is Fibromyalgia Awareness Day, I don't know if it is a coincidence that it falls on the anniversary of your death or not. I developed FMS after I had a bad accident 10 years after you died. While your disability was visible to the world, mine is hidden away unless I tell others about what happens to me. You see, without knowing it, by your example you raised me to fight my illness and so did dad. I'm not ashamed that I get sick sometimes, but rather I'm proud that regardless of this disease, I fight it hard and I think that is why so many don't realize I'm ill. I may have this disease, but it does not define WHO I AM. Polio did not define you, dad's spinal injury did not define him, they made you both stronger individuals because you overcame so much. For me, my FMS made me want my dreams more, so I fought even harder once I became ill to reach those goals and make the dreams come true. It is very appropriate that FMS Awareness Day and your date of death fall upon the same day.
I can remember you being with me when I was 16 years old. I had major surgery and lost one of my ovaries. You were there. You were always there. You sat in the waiting room for hours and worried. Due to the size of the tumor, the surgery took much longer than expected. You were exhausted and scared. At least that's what the nurses told me later on. When I came back to my room I didn't remember much, I would wake up and get terribly sick, then pass back out. Do you know what I do remember? I can still hear your soft, comforting voice clear as a bell and sometimes I think I can still feel the touch of your hands on my face and forehead. All night long you cared for me from your wheelchair. You constantly placed cool hand towels on my face and forehead. You wouldn't leave my side. You had school that night, and exams to take. You were recovering from the divorce, going to school after staying at home with my sister and I for 18 years. Your life had been turned upside down. Regardless, you still stayed with me, you just couldn't go and leave me alone and so very sick. You were the first person I asked for in recovery after the surgery, and the surgeries that followed in the years to come.
You were there when I graduated, got married, when I had the second surgery in hopes of getting pregnant. You were there when I miscarried, rejoiced with me when my two boys were born and then baptized and you cried with me when I lost my marriage. During all the important times, you were always there, just a phone call away.
You couldn't walk, you were confined to that wheelchair. But you were such a big part of my life, you were a part of me. You still are a part of me. I will always remember the smell of that perfume, hand lotion and the touch of your hands. They were still soft, but had a few calluses from pushing your wheelchair for 40 years (like the callus on your left forefinger, middle knuckle). Funny the details we remember isn’t it?
I was devastated that you died alone, Mom. If I had known you were sick that morning, I would have come over right away. I know you must have been trying to call me, the phone was right there beside you off the hook. I felt so much guilt for years, but now I know that it was just your time. God wanted you to come home and be with Him. Grandma and Grandpa were waiting for you, too. You had fought life and your disability long and hard and it was time for you to be with Jesus. He stopped all your pain and suffering and all your fears about the future in that moment. He even restored your broken body! In time I learned to accept that we may be apart for a long time, but we will share eternity together. We have so much to catch up on. When my time comes, we will all sit together and talk about the things we missed while we were apart. Although, something tells me you already know a lot of what is going on in my life!
Right after you passed, I found out I was pregnant again. Can you believe it? Wow it was such a miracle! Three weeks to the date "surprise" I discovered I was pregnant. Even though the doctors said it could never, ever happen again. After the miscarriage they figured my first son was luck, my second son a miracle; but 4 1/2 years later to have the third son? Well, let's just say I believe that God felt I needed something beautiful and full of life. He gave me something (someone) fresh and new to look forward to after losing such a huge part of my life when you were called Home. You will really love him, Mom. He's something special. All of the boys are something special. They have grown up in the faith, strong, kind and loving. Each child is a part of me, but each child totally unique and individual. They are so close to one another. Something I prayed that they would have to cherish and something that God has seen fit to provide for them.
I've been sad at times to see so many other people who still have their parents. They are even older than me and some don't realize what they have. But I'm doing my best to appreciate what I have and be happy. While the older boys remember and love you, I've had to be content to tell Peyton all about you. I know he loves you, too. I've shared stories that you shared with me and done my best to keep your memory alive in some way for all of them. They all three still have the special bears that you bought when they were born. I bought one for Peyton for you since you could not be here.
Well Mom, I just wanted you to know that I love you with all of my heart and that many of my dreams have come true. Even though I have this horrid disease, I finally got my own horse, two, actually. They keep me happy, active and healthy. Your youngest grandson loves them as much as his mom, so the second horse came along about 2 years ago. Your grandson is on a National Championship Drill team. Brandon is going to be a teacher, Curtis is going to be a police officer and hopefully someday, a detective. You would be so proud of them! I'm sure that if God let's you look down from heaven from time to time to see special days, you would burst with joy!
So mom, while today we try to educate the world about this unseeen illness that can ruin lives, I want to honor and celebrate your life as well. Because between you and Dad, you both taught me that in the face of disability, pain, and tribulations, we are survivors. We fight it, we go on and chase the dreams we have. Fibromyalgia has not and will not ruin my life. I won't give it permission. It has actually pushed me to fight harder for my dreams and you and dad are the two best examples a daughter could ever have!
So keep the tea kettle warm for me! When my time comes (although it may be awhile) we have a lot to catch up on! I'm so glad that you have not had to suffer. I know that you were in a lot of pain, I know that you were very weak from the post-polio syndrome. God is gracious and wise and I'm so thankful he spared you any further worry or agony. I get great comfort knowing that you are in paradise. I think of you holding Rebecca each time I see a rainbow in the sky and I know that someday, I'll see all of you again and I will also be in the arms of my loving Savior. In the meantime I will remember what you taught me and what is in God's Word, "that with Him, all things are possible.
I wanted to share something special with you. It was something that I did with my boys one Christmas. We called it "The Plan" and it gave us so much joy and taught our kids a valuable lesson about giving selflessly. I'm telling you this now because I thought maybe you would be able to do the same with your kids and get the same joy in return!
There have been times in my life's journey when God sent people in my path to help my family and me. Sometimes this was in the form of financial support, prayer, friendship or some other special way. It always happened just when I was at the end of my rope and needed God's help. Sometimes they were people I never knew. But, it was clear to me that whatever assistance was being given; the timing was unmistakably God's hand moving people to where they needed to be so He could help me in His divine way.
One year when we were blessed to have a little extra money. I was working at a place where I knew of a family who was going to have an extremely slim Christmas. The family consisted of a single mom who was the victim of a traumatic injury and was raising a child on her own. Something about this family touched my heart and I wanted to do something special for them. I also wanted to teach my sons about doing things for others without expecting anything in return. We got together and devised "The Plan."
Now there were a few rules to follow in accomplishing “The Plan.” I'm technically breaking one of those rules now, but after all these years, I think the boys understood the lesson. My motivation is to pass on what we learned, not to pat myself on the back in any way. Perhaps my story will inspire someone else who reads this. So here is the story that I lovingly refer to as:
† ♥THE PLAN♥ †
† Step #1 For the plan to work, the boys would have to agree to tell NO ONE what we did. Not even their friends at school. It was not to leave our family. If they did, then that meant the secret would be out and all of a sudden what we did for someone else became more about us and less about the family in need.
† Step #2 We took ourselves to the store and spent what we could afford. We purchased a few gifts for the child, some clothing, and much needed cash for the single mom, along with a card that we carefully selected. The card was filled with encouragement and scripture of God's promise to care for us in times of trouble. We signed the card "May God Watch Over You! Merry Christmas from A Family Who Cares"
† Step #3 I instructed the boys that to deliver the gifts, we would need to park in the street next door to the "target" house. It was only the mom and son at home. I couldn't take the chance of being recognized, so my two older boys (who were about nine and ten at the time) would be making the delivery. So we drove to our target. During that drive we spoke of the joys of giving to others who were less fortunate and also we spoke about Matthew 6 vs. 3-4a "But when you do a charitable deed, do not let your left hand know what your right hand is doing that your charitable deed may be done in secret...". In other words, let our good works be done in secret before the Lord. Not to bring glory to ourselves, but to bring glory to the Lord. I wanted them to learn early on that giving to others in need is the same as giving an offering to the Lord. We don't glorify ourselves or boast about it. By not allowing them to tell anyone, including their friends, they would always have that knowledge in their hearts.
† Step #4 When we arrived, we positioned the car so I could see them, but whoever answered the door wouldn't be able to see the car as we made our "getaway". The boys then took the gifts and the card with the cash, rang the bell and handed it to the little boy who answered the door. They hollered "Merry Christmas" and took off running back to me and we left before they could see who we really were.
To this day I will never forget the smiles on the faces of MY children! They were grinning from ear to ear! The family had no idea who we might be, where we came from or how we heard about their situation. They still don't to this day, I'm most certain of it. But they have blessed my boys and me richly.
Every year at about this time, I remember what we did together that Christmas. It was such a blessing to my children and me. It was our little secret to keep! So now our secret is out to share with you in hopes that perhaps you may be inspired somehow to do something similar with your child or children this season. It doesn't have to be big, elaborate, or fancy. But making “The Plan” anonymous, and keeping all glory and focus on the Lord in turn blessed us in ways that we did not expect.
My blessing was the joy in my heart that my children had learned the gift of giving to others without the need of personal recognition. Knowing that the Lord had given us more than we needed that year was another blessing. We were even more grateful to be able to share what He had given to us with others.
So as people scurry around this year and fulfill their Christmas shopping lists, let's not forget the greatest gift of all. The small Babe, wrapped in swaddling clothes and laying in a manager. Jesus Christ, God's greatest gift for ALL of mankind.
Merry Christmas to you all and may you be blessed this holiday season!
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.
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.
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.
