Now I’m Paying for It!
- Good girl
- No pranks
- No sex
- No tickets
- Trust- worthy
- Family- oriented
- Knee rep’t needed
- CRPS onset
- Severe case = disability
- Pain Mgt
- Appts monthly
- WY Disable
- No help
You’ve heard that lightning never strikes the same place twice. Well, beware because the Blare household is proof that the old idiom is a myth. Why? Because we don’t have one disabled chronic pain and rare disease warrior trying to survive in our home, but two.
The first is my husband, James who has had thirty-nine surgeries and needs at the minimum two major joint reconstruction repairs. The second is me, of course, who due to my knee replacement three years ago, developed the most painful disease known to man. Complex Regional Pain Syndrome, Type 2.
Maybe I should begin at the beginning for this to really make sense, huh?
It is time to stop the torture and shame of being a pain patient in the United States.Renee Blare, RPh (disabled)
My name is Renee Blare and I was born with a soft cleft palate and lots of challenges. This made me a shy, withdrawn child and one who was always trying to ‘catch up’ with the rest of the world. For some people, like my husband, it meant pounding anybody in the ground who dared to expect anything else, or call them anything less but their names.
For me? I was afraid of my own shadow much less anybody else’s. But as I grew a vein of determination and something much harder was forged within my soul. Why? Because the pain, much like that within my husband, of being mocked, hazed, bullied, and rejected for being different, turned into strength.
Anybody who is born different for any reason understands what I’m talking about.
I say all of that to say this— I am a rule follower, not a land forger. Why?
This brings us to another part of my life. I have, for most of my life, found comfort in structure— rules. They have provided me a system or place of definition in a world of chaos and pain. This started from when I was a child and I have used it my entire life.
Structure, logic, rules, science, pharmacy… my life has always been about a system of some sort to bring chaos and pain under control. Whether it be mental, emotional, or physical, I needed it to survive.
Until the Lord ripped all of that away one Spring. Pain consumed my life. Nothing I did brought it under control. Science didn’t have the answers. Logic only took me so far and structure? I couldn’t rationalize the situation into a neat, tidy box. And rules? That’s where we are today. Let’s talk about the little girl who has followed the rules
Renee — me — has, for the most part, been an exemplary student and citizen of her chosen career and country. She rarely challenged authority, much less her parents. Rules were made for the protection of all, and not to be broken. That’s how she believed and lived her life.
- Renee followed the rules.
- She was in by curfew
- She never skipped school.
- She went to college.
- She became a pharmacist.
She did her job by the book. Protected her patients to the upmost of her ability, and followed the rules, the law, and the ethical code of conduct, but most of all, she abided by every oath she took— starting with the Pharmacist Oath.
Renee followed the rules.
And then I (Renee) became disabled and I discovered in America, rules, no matter who makes them, are made to be broken. My protection blanket betrayed me.
Rule Number One: The disabled are protected in the country from discrimination and abuse by the government. *ADA
This is the biggest lie in America. The American with Disabilities Act is not enforced for Chronic Pain Patients and Rare Disease Patients who are disabled of which I am one as well as my husband.
We are discarded like the newborn calf on the high plains of Wyoming in a spring snowstorm. We are left to die while the herd seeks shelter from the rancher’s fresh laid hay in the gated pastures of home.
Except, you see, in Wyoming, the rancher would BE the ADA and ACLU that the United States citizens have expected of old. How?
A Wyoming rancher braves the bitter cold and life-threatening territory, and goes out into the storm. He rescues the hurt and suffering animal that can’t defend itself— the one or two, however many he needs to— and brings them back to the safety of the herd. He nurses them back to health if NEED BE. Why? Because they are part of HIS HERD. HIS HOME.
The Chronic and Rare Disease Patient in this country are part of AMERICA TOO! We are hurt and suffering and DYING. We are lost in the storm. Who will come and save us?
The rules are broken. They are not being followed. They have lost their power in this country because nobody is enforcing them. Instead they are making up their own as they go along.
What rules am I talking about?
Laws on the Books
American with Disabilities
Rare Disease Research
DEA threats/arrest disabled
DEA threats/arrest patients
DEA threats/arrest doctors
DEA threat/arrests dr/pts
No care for pain
No pain care for post surg, chronic pain, emergent, urgent care, child dzs,
I live in the United States of America and if I didn’t know better by looking at this list, I would swear I lived in a country that believed in torture. Or are we actually enforcing genocide and Third Reich tactics now? I’m not laughing. This is no joke.
Do you think this will end with Chronic Pain and Rare Disease patients, America? Opiates are the most useful drugs in the American arsenal. They are not going anywhere! And they are NOT killing your kids, brothers, sisters, parents, and friends. What is?
SYNTHETIC FENTANYL. Look it up. It’s not a natural drug. It’s not an NATURAL OPIATE. It’s a concocted nightmare. It’s MADE IN A LAB LIKE THE CORONAVIRUS.
Think about that for a second. Who and what is killing the addicts in America? It’s not the doctors and Chronic Pain Patients who live in your communities and take care of you. It’s the people who work in a LAB ACROSS THE WORLD.
AND YOU ARE TORTURING YOUR NEIGHBOR FOR THEM. AN INNOCENT PAIN PATIENT WHO HAS DONE NOTHING WRONG, NOT EVEN BROKE A RULE.
Rule Number Two: People are inherently good and do not hurt others intentionally.
I believe with my whole heart that everybody in this country has a chronic pain patient in their family or friend circle. They KNOW someone well who has suffered at the hand of the government over the past 5-10 years. And they are NOT an addict.
These people work at a professional job or maybe even a healthcare worker. Someone you would never know suffer chronic pain or have a rare disease if you were to meet them as a stranger. Why? Because they are not DEBILITATED by their pain. They don’t cry each morning after throwing up after rising from bed. They don’t need to stay in a recliner all day because they can’t stand or sit upright because the pain sends them to their knees. But that doesn’t mean they are NOT a Chronic Pain Patient. It means they aren’t as bad as the other one— yet.
You see, you know me. You just don’t know it! What I am saying?
I’m looking at you in the eyes of your mom or sister who has MS or Fibromyalgia. I stare back you in the smile of your best friend who fights the arthritis in her knees every day at work and goes home to soak in the tub and then lather the cream on after maybe a glass of wine. I’m the one who tosses the paint on the canvas and fights the shoulder and wrist pain afterwards. I’m the brother
- I’m looking at you through the eyes of your mom who has MS and struggles to open that jar.
- I’m in the smile of your sister who has Fibromyalgia that winces when she rises from the dinner table.
- I’m with you when you wait for your best friend after work as she rubs cream on her sore arthritis knees and takes a pain pill.
- I’m standing beside you when you toss the paint on the canvas but have to stop because your wrist and shoulder hurt too much to continue.
- I’m the sore throat after eating a bag of chips with that too hot salsa reminding you to have the surgery you should have had four years ago but won’t because you know you won’t get pain relief afterward.
- I’m the ringing in your ears because the pain has hit a high crescendo and you have held your breath too long.
- I’m the pain in your fingers from holding your brother’s hand while he breathes through another long, trying muscle cramp from having no muscle tone in his leg from CRPS.
It’s time for the story to change. It’s time for America to stop being AFRAID AND DEFEND HER OWN PEOPLE.
Renee Blare, RPh (disabled)
Chronic Pain Alliance of the West (CPAW)
An affiliate of the National Pain Council