In 2015, Barby Ingle, President of the International Pain Foundation, contacted me regarding us leading the way for an Arachnoiditis Awareness Month. She asked me to choose a month. I immediately began to put careful thought into each season, what each month represented, as well as how our bodies respond to the weather that comes with the seasons. I also thought of the seasons of our lives. The seasons that come with living with Arachnoiditis. I knew the winter months were out. None of us would feel like bringing forth much awareness and education during the winter months because we spend most of our winter fighting to stay warm. Being cold not only causes us tremendous pain, but also causes vasospasms. Spring months bring forth rain, and keep many confined to the indoors as well. Fall months aren’t too terribly bad. But, summer … with summer comes Independence month. This is one thing we all share. We want to gain our independence back on whatever level we can. So, I chose the month of July to represent us all. My wish is that each of you who live with this condition will find empowerment to achieve, adapt, improvise, and overcome. My wish is that you each gain independence through learning to own your condition.
At the time of this publication, Arachnoiditis Awareness Month is coming to an end. This has been a most productive month for us all. Together, we have come so far with our advocacy efforts. The lives of caregivers, families, patients, and physicians across the globe are being educated, empowered, and saved. We must not cease. As far as we have come, we have much more left to accomplish.
Every single day I am contacted by patients themselves, because they have been left on their own to cope with some of the most debilitating, most painful medical conditions known in the history of mankind. They face daily battles on levels that are life altering on every molecular aspect of their mental and physical well-being. Many are also being abandoned by their treating physicians.
I am also contacted frequently by family, friends, and caregivers of patients who suffer from Arachnoiditis, and other chronic illness and pain conditions seeking help. Seeking guidance and knowledge on ways to help them. THIS – makes my heart runneth over. It is never an easy task to watch a loved one suffer tortuous level of pain, feeling helpless. Yet, they put their armor on daily and do what they can to help. They do this understanding their level of helplessness doesn’t come close to comparing to the level of suffering their loved is enduring. Several who have contacted me have sold their homes, vehicles, and even taken on two jobs to help support their loved one. Never complaining, and certainly never making their loved one feel like a burden or guilty. The sacrifice they make is done so unselfishly.
I’m not the only one who is contacted daily. All of our administrators leading the support groups are contacted as well. We are adding new members every single day. You know what? I wasn’t always an administrator. I wasn’t always an advocate. I was a patient. I quickly became labeled as the Arachnoiditis and Medical Harm Poster Child. These administrators and their allies saved my life. In everything I do, I pay their unselfish and loving acts of kindness forward. Each and every day I wake up and ask God to show me how I can be a vessel to pay it forward. The International Pain Foundation has been of tremendous help in sharing awareness and education, and is also contacted by patients and caregivers for guidance. Together, we are all making a positive difference in the lives of not only Arachnoiditis patients, but chronic illness and pain patients across the globe as a whole.
I would like share with the readers of this publication in detailed depth as to what these patients experience.
Imagine for a moment waking up one day to find your life has just changed on every level imaginable. You are no longer able to work. Meaning, you are no longer able to provide for yourself the way you once were able to. Imagine becoming completely dependent upon others to care and provide for you. Not everyone has those people in their lives that would do this without making demands, or dictating what you deserve or don’t deserve. Imagine losing your independence on every level of your life.
Imagine for a moment if you will, that you are burning. I’m not talking about pulled or torn muscle burn, although we do experience that. We go through random spans of time where our muscles may do that in our sleep. I’m talking about the level of burning that would come from your veins being replaced with lighter fluid, and then ignited. I’m talking about the level of burning that would come from placing your hand, foot, or affected area in acid or lava. Only not being able to remove it. Imagine being stabbed by a knife or ice pick at random, without warning. Imagine an electrical war going on inside every fiber of your being, as if you had been shot with a Taser gun. Imagine the sensation of being covered in areas with road rash embedded with gravel. Imagine the air, or a slight breeze either feeling like flames, or ice, leaving you frost bitten. Imagine not being able to touch certain metals like stainless steel, grass with your bare feet, or a tile floor. Imagine having to go days without emerging in water to relax in a bath because the water burns you. Not being able to shower because the water either burns your skin, or the water from the nozzle hitting your skin feels like needles. Imagine your feet profusely sweating and swelling until the skin comes in layers and leaves them bleeding. Imagine the sensation of being attacked by hundreds of fire ants. Imagine never knowing what you can wear from day to day, because textures cause you pain. Imagine never knowing if what you could do one day, you were unable to the next.
Now, imagine this. You are left alone and isolated the majority of the time. Phone call conversations cease, either because they quit calling, or you quit answering. Family members disappear. Friends go on with their lives, as they should. Spouses leave. Human interaction with body language, tones and touch- that all but disappears.
Many who suffer from Arachnoiditis, and other chronic pain conditions to include RSD/CRPS spend more time with their treating physicians than with family and friends. The majority are either on the wrong medications all together, under medicated, or over medicated. Not every chronic pain patient shares the same chemical breakdown or response, nor they suffer the same the same symptoms. Yet the majority seem to be put through the same cycle and rotation of medications like clockwork, trying to find what works. Regardless, they are taking the only immediate solution that might prevent them from cutting off a limb, or committing suicide. They are taking physically dependent mind altering, organ destroying medications that produce side effects, which leads to more medications. They endure this looking for relief, to somehow survive. As time goes by, the body adapts to the medications and they are then prescribed a higher dosage, or switched to another medication. This cycle seems to never ending, but when it does end, it usually ends in physicians refusing to continue to treat the patient because they have already implanted them with numerous devices making their huge kickbacks which have resulted in making the patient worse than before. Or, it ends in suicide.
Imagine being medicated on some of the highest levels of opioid and hallucinogenic medications, and you are expected to function as normal and handle all negative and stressful situations as a pro. Yet, because this is simply not possible, when you do finally have a breakdown, you are left to handle that on your own as well because heaven forbid those who should actually be there, show up. Most times, those who experience this, survive because of those in their support groups across the globe. Sad as this is, this is truth. How any human being could abandon another who is fighting with all of their might to live with all of this is absolutely beyond me. How any human being could judge another who lives with this condition for not being able to accomplish or perform one day, what they were able to do the day prior is beyond my grasp of comprehension. One thing is for certain. When your life is altered due to any chronic condition, you find out exactly who your family and friends are.
As I bring this article to a close, I would like to express to every sufferer of Arachnoiditis, as well as other chronic illness and pain sufferers- you are not alone. You are never alone. Reach out to someone. If you don’t have anyone in the physical flesh close to you to reach out to, please find a support group online. If you suffer from Arachnoiditis, and would like to join a support I recommend the groups the named ARACHNOIDITIS (all CAPS) or Arachnoiditis, Together We Fight.
If you like to learn more about Arachnoiditis, you will find the following links helpful.