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 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.
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!
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!
