When an opponent must face another who appears to be equally matched, what do they do? Or our military seeks the best entry point into an active enemy territory, what skill do they resort to? When a leopard goes on a hunt, what experience is in their DNA, to guide the best tactic? What all of these have in common is the necessity for stealth. Stealth is developed through trial and error as you learn the boundary between being seen and going undetected. Plainly put, if you seek a goal, that will present incredible resistance and be difficult to navigate once your intention is known, stealth allows for greater success. It aids in avoiding the most substantial part of injuries likely to occur. This is the state of seeking higher level medical services and treatments for those of us in chronic medical crisis. I am the leopard, and I seek to slay the evaluations standing in my way. My children wait back at the den, waiting to feed on all the medical treatments that come from the spilled blood of the insurance systems fattened, gluttonous gut.
Evaluating and analyzing seem to be a fact of life. They’re those unavoidable, often boing processes, necessary to transition from where we are to where we need to be, or where we’ve been to where we have currently landed. We can’t get away from them. Doing them can be as innocuous as standing back to see if that little black dress really looks good, to rule out a feared disorder through blood work.
In most areas of life, evaluation and analysis expose what fits and what doesn’t, what is good compared to what is anything but good. They are specifically designed to give us enough detail to make informed decisions, generally speaking. Any component used in the process of making sound decisions seems unwise to argue with. In tandem, we are told not to over think things, don’t over analyze, or evaluate something too intensely.
I remember painting the nursery for my first child. I must have spent 6-8 hours comparing and analyzing which shades of yellow I liked against differing shades of blue. After all was completed I glowed in awe of my interior design excellence. Now 14 years later, flipping through cherished baby books and photos taken back then, I can’t for the life of me understand what my obsession with the Sweden flag was. Which happens to be identical right down to the border design of what I eventually chose. Back when we decorated, I thought I had discovered the newest color combination on earth. Oh, how I miss those days of pregnancy-induced hormonal-driven ignorance.
During pregnancy, especially towards the end of mine, the sense of panic seemed constant. I wanted everything to be ready and with backup plans for the backup plans. After 13 years of marriage, I felt ready and prepared, so surprises were not on the to-do list. When the moment came to hold my precious baby, all the hours of preening a nursery seem misplaced. What mattered, then and now is enjoying my sons. I do not over analyze their smiles, or volume of a laugh, or bother counting the number of times they hug me. I live in those moments one by one for what they are and can become.
Constant medical crisis places you in need of things urgently. I have grown callouses on the nerves of self-preservation because the chronic denial of basic needs places you on the path where you get trampled over frequently. You get told no so often, or sorry, we can’t, it’s not policy, no more funding, out of stock, the hospital doesn’t supply them, we no longer cover, and any other combination that equates to no, one can think of. In fact the only yes I can depend on is, yes Pamela, we will indeed say no, more than yes—wow, thanks, medical world.
How does all this relate to health, wellness, and dealing with medical disabilities? It is knowing that everybody else is evaluating me and my children, from our living situation to our finances and if we deserve daily comforts. They scrutinize if we truly need medical treatments and interventions. What did we do wrong? That is the hidden question hiding under the layers of “pre-qualifiers” no one talks about. If an insurance company can find a way out, out they will go, and with a blistering speed at that.
There is a misconception that medical crisis equates to complete incapacitation. Or that if you are disabled or critically sick, you would be bedridden if not inpatient somewhere. There is this type of denial and refusal to believe people are actually that desperately ill, yet in the line at Starbucks. The truth today is, people, walk around in medical crisis all the time. That is how many of us are forced to live. Long painful, terrifying days that do not necessarily lead themselves to be full of hope for tomorrow. That hope must come from somewhere else, and finding it is imperative to life.
I had a store manager threaten to kick my 14-year-old out when he used the electric wheelchair. He looked at my son, who was wearing a boot cast, with his central port line surgical incision visible, evaluated what he was seeing and deemed it inappropriate. John is adult sized as my pictures on site prove, but more so he has established disabilities and since the store refuses to have manual ones they cannot legally restrict him. When I reminded him of that and offered the name and number of the local FBI Agent who handles violations, he re-evaluated and walked away. I still shop there, he no longer manages there, ya me!
I was parking at Walmart, and an elderly man came up to me complaining I had no business taking a handicap slot away from people who really need them. Now I am thinking hmm, what information does he have to make that decision? How has he evaluated that and believe me to be inappropriate? What is the best way to interact with that type of person? What I chose to do was say, “Sir I am so grateful you care for the disabled. We need more people like you, fighting, and looking out for us. Thanks. You look like an educated man. I think you would enjoy visiting the website Invisible Disabilities Org . It has great information and can explain why your approach to me is unhelpful and hurtful. Keep looking out for us, but not while hurting us too”. Working to control my anger was tiring, and it takes effort to focus on what you are there to do. I was fuming the rest of the day. Hopefully, he did read up and is no longer evaluating people by sight only. My best advice, if someone has their handicap plaque, leave them alone. It’s hard enough to get those signed from Drs in the first place and establishing a disability is done through physicians and courts, not in the parking lots of grocery stores.
In regards to medical evaluations done directly in a providers office, have a completely different environment to manage. What physicians look for in their assessment and evaluations of you and/or children is often not what the insurance companies are looking for to qualify you for services or treatment. In fact, you can have layers of disease, but if a Dr does not specify a severity, an insurance company is interpretive to their own benefit. To ensure I do not get trapped into that endless cycle of going back and forth to the physician’s office to “redo”, “re-evaluate”, or “repeat labs”, I investigate what criteria must be met for treatment or services to be covered. I bring that information to the doctor or explain in detail what my insurance will respond to. I’ve had to learn the system like a claims agent. That takes incredible energy too. The entire process is draining and it increases the level of suffering when forced to do all that, and be the one who is sick as well.
Learning the art has paid off, but is no less difficult or time-consuming. I have done it from my bed throwing up in between phone calls, in a surgery waiting room—for my own surgery, even on my office exam table deli paper—that’s what I call it, (sorry for the imagery), and in a parking lot or two. My worst dream last month was of getting a paper cut that cost me 56K in blood transfusions and my neighbor said, “just take the blood from my dog next time”. Hows that for weird stress driven nightmares? You have to become an expert in presenting the correct information for evaluation documents to contain critical qualifier points and no shortcuts exist.
I have yet to find a service that offers assistance in helping families navigate healthcare systems effectively be of any benefit, and not even close to what I have learned to do for myself. Agencies that do have the ability, further bleed your finances. That’s assuming your in the bracket of income class who can afford it in the first place. If you have been sick long enough, are already disabled, or caring for children medically fragile from birth, it’s likely that funds ran out years ago. Here’s the thing, our emotional energy, and internal life support systems do not give us a low fuel warning. There either is enough gas to run or not. Fumes of energy evaporate and the right kind of gas stations cost too much, (i.e. respite services).
I push myself, I stifle my physical and mental pain, and go for months on 2-3 hours of sleep a day, just to put a small dent in the administrative part of our chronic medical crisis. Now before you think I am high-fiving myself, hold up…love has been the go for my engine. My desire to save and protect my children throttles me into action and cranks the Pamela Power to extremes. That is the size of it all. There is a cost to the body doing that work and the damage threatens to be irreversible. So every action I can take to limit those process injuries, I will exploit to the fullest.
I wish I had easier answers, a more upbeat story to tell. I wish I could guide people onto a path free of thorns and sharp rocks. It’s so unfair, to place the sick and injured on a trail made to crumble and drop. It hurts and I may have a few tips on how to reach the end of the path, but I can’t spare you the scrapes along the way. If there is good news to glean, its that with some forethought, being mindfulness and prepared, more favorable outcomes are possible. I remain encouraged that things such as a stealthy approach to conquering evaluations open critical doors so well. It is a power punch for sure. Once that evaluation is complete, capturing all the delicate details the insurance carrier, surgeon or case manager needs to act on your behalf. You will be glad the scrapes you got developing your stealth, paid off.
I pray for a country where purity of heart wins over the greed of the gut. I really do. But considering those facts and knowing injuries and resistance will rise up, engage your superpower of stealth, and perhaps together we can heal each others wounds.—
Thank you for your continued interest to read. This is a non-professional Mom blog with a focus on sharing and at times, allowing the goofball to come out and play. Hopefully, my super-power endowing, teleportation capable content makes you forget the terrible sentence structure. I appreciate your support and encouragement.
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