To The Editor:
Hello, my name is Mary L Horner and I am writing this letter in hopes that it will reach hearts and minds all across America – and I need your help to do this.
I want, no, I need people to understand that there are many whom are suffering from chronic illnesses such as lupus, fibromyalgia, rheumatoid arthritis, osteoarthritis, Crohns … and there are thousands of us suffering in daily silence with the painful syndrome called fibromyalgia. It seems that no one is able to understand the chronic pain it causes as well as the strain it has put on people’s lives and families.
There are a lot of us suffering with these chronic diseases who are not receiving good healthcare, including those of us who have been forced to resign from our employment due to its symptoms and how it affects our ability to perform our job.
This was the case for me. I worked as a Certified Nurse’s Assistant, which I loved, and have been in the healthcare field for at least, if not more than, 15 years.
One day, I went to lift one of my residents at work – one whom I had been lifting alone daily. This day, as I began to turn towards his bed in order to lay him in it, my arms and legs began to go numb and I began to lose motor function. Fortunately, I was able to place my resident on the bed after which immediately my body just dropped to the floor.
I knew then that something was going all wrong even and though I had been diagnosed with lupus, I didn’t understand really what it was or what effect it would have on my body.
My body began going downhill from that disastrous day. I was forced to quit my job without warning. I felt alone and ashamed that I could have accidently dropped my resident and possibly hurt them – something I would never want to let happen.
I have discovered that many people are being mistreated by healthcare teams such as doctors and other healthcare workers when it comes to this disease. We are being told to just go home after a few tests are run, no matter how many times we have been to the emergency room for something that we knew just wasn’t right in our bodies. Or we are being talked down to and made to feel like were telling lies when we mention the extent of the chronic pain we are in.
But we know in spite of this essentially debilitating disease, for us, our lives have to go on. We smile with our families even when we want to just break down and cry. We have been told by some of the doctors and even our own families to just blow it off, to stop being lazy and get off our behinds, or get up and take care of our child or children, as if we wouldn’t do it we could.
It’s hurtful to be living in chronic pain, but it’s even more hurtful when you have to live with the pain of not being able to explain how much pain you are in. It leaves us feeling depressed, worthless and, most of all, causes suicidal thoughts.
I have joined a support group called Women with Fibromyalgia and this group has offered me so much support since I have been involved in it.
I have learned that I am not alone in dealing with healthcare officials blowing me off or giving me any type of medicines, all because they prefer to treat me as a mental case and rather than someone legitimately suffering from something very real. I soon found out after speaking with these women that I wasn’t the only one being mistreated by healthcare officials.
These diseases are affecting lives tremendously – people are becoming homeless, losing their jobs, losing their family, not able to pay certain bills within the house hold or buy food to eat and, most importantly, losing hope.
Fibromyalgia by itself should be declared a chronic illness that should automatically get people some type of assistance, allowing people access to the disability help one deserves. Instead, we are going hungry or committing suicide or dying off because it takes so long to get approved for help from the same taxes and money the government takes out of our checks.
Here is what the future holds for us if our government and politicians don’t take a stand and help come up with a cure for this disease: Our homeless rate is getting ready to go up, more people are going to have no choice but to depend on government assistance; unemployment rate is going to go on an all-time high as more and more of us are forced to out of work by the pain.
This is why I and the ladies of a Facebook site called Fibro Awareness Operation Sunshine are trying to bring awareness of this potentially fatal disease before it gets even worse.
I, myself, am now on public assistance which pays $350 for my rent and I get $36 per month spending money. I also get $194 in food stamps. Yeah, I would never have believed one year ago that I would be in this type of situation.
I can speak for myself and for others that this is no way for anyone to live, whether they are single or have a child or children.
Women for Fibromyalgia have chosen the colors purple and black to represent our cause.
Purple denotes the beauty of us as a people – our strength and courage to stand and fight because we know we need help and we have joined together, vowing to be there for one another and love and support. Black stands for our pain and suffering, the withdrawing away from a once normal life that has now been taken over by pain.
It symbolizes how our strength is failing us, how we long for a cure, the depression, anxiety, migraine headaches, heat and cold sensitivity, neuralgia, blurred vision, carpal tunnel, ringing in the ears, sinus problems, sensitivity to light, sound, smells, and touch, weight loss or gain, alienation from others, our inability to stay focused in order to retain information, difficulty reading, counting, writing, comprehending, dry skin/ rashes, fibroid tumors, fatigue, bulging discs, flare-ups and how you never know they are coming, brain fogs, IBS, cotton mouth/constant thirst, tendinitis, and myofascial pain and this list goes on and on.
But at least you can read what our pain is like on a daily basis and how we are struggling to maintain normal lives and be productive in society.
Dr. Paul Whitcomb has an internet site where he explains the suicides deaths that have come from people not wanting to live with this constant pain in their lives and bodies nor do people want to live with being alienated from their family and friends whom are not understanding what is going on with us.
So, we are truly asking for help to bring awareness to these painful diseases and a cure if possible.
But until then we need help…and many are willing to speak out about how it has affected their lives. Fibromyalgia and the pain of living with it.
Operation Sunshine
Operation Sunshine (https://www.facebook.com/groups/406958659663079/) was founded and is headed up by Karen Verbout Larson. The Facebook support page has a PayPal account in order to accept funding to be used to help those suffering from the disease and who are in need – help, for instance, with groceries, utility payment, rent, car note, insurance, etc.
Mary L Horner
Baldwinsville
Discover more from Oswego County Today
Subscribe to get the latest posts sent to your email.
I have Fibromyalgia in pain all the time it even wakes me up in the middle of the night I hate being in pain all the timr no matter what I take for it don’t help with the pain my family doctor put me on gabapentin 300 it just takes the edge off for only one hour
As a 30 year ‘survivor’ of Fibromyalgia…it had no name when I was diagnosed so it was put under the heading of chronic pain conditions or a ‘myalgia.’ There are so many things we can do to help us manage our pain, but often they take pain to get there. Mild exercise like walking (which at the start may only be four houses up, and four houses back and then a quick lie down…Remaining in one position can exasperate the pain. DIET is a big one…what you eat affects pain management. MANY fibro sufferers have issues with food tolerance. And many cannot eat too much fat, or too much sugar, or too much dairy. Hard to do this when you hurt so much all you want is something to eat ‘fast.’ But fast food is a disaster to the fibro sufferer.
I ran a fibro support group for 18 months and found that many people who regularly attended hoped for a pill to solve the issue. There is no pill to end fibromyalgia, but there are medications that help, although many just give us other medical issues to deal with.
OFTEN fibromyalgia is exasperated by stress, and getting out of stressful situations ends much of the pain. I left a job I liked very much that just happened to be very very stressful. Hard to leave decent money, and vacation time.
For me, I have to keep moving. Even sleeping too late puts me in pain. When I can’t tolerate an outdoor walk (cold weather/rain/sleet), I might go to the grocery store or Wally World and just slowly walk around. Next time, I’ll walk outside, a bit more briskly.
Plenty of filtered water helps, and laughter IS the best medicine. Watching a good comedy with family and friends, can sometimes be all that we CAN do to get our minds off the persistent pain.
Family that understands we are not well, helps. Family and friends who do not believe we are suffering are no help at all. Don’t speak to them about the pain if they are going to give you negative information on how you SHOULD just get on with it. Don’t go there, it will make the fibo worse. Now you are depressed and angry as well as in pain. Anger translates to physical pain in a lot of instances.
Mostly, be aware, with physical therapy, the right trigger point massage therapist, diet, exercise and activities we enjoy, there CAN be a lengthy remission. I had one for a decade!
Debbie