I did not want a (new) cause. Loud and bombastic is not energy in my bandwidth but I feel forced to summon it anyway. I wanted to peacefully and methodically put my life together after years of abuse on a number of fronts. I was doing better than I had in a long time. I thought, this time, that I'd be afforded the grace of turning a corner. I thought that I would be afforded the chance to really start healing, something that has eluded me for years.
Shattered in heart, soul, and body, I feel forced to fight the same battle over and over again, against not only the federal government but the medical system, at large. It continues to see me as a woman of color to be dismissed at the most fundamental levels, dismissing my pain, my suffering, my diagnosis, as if I am qualified to treat myself. My pancreatic condition does not respond well to simple natural remedies. It has been well more than a month since the feds cut off my pancreatic pain control.
Since last I wrote about this issue, I have discovered many lies that Wellcare, one Medicare's drug providers, told me about overrides and false promises, offers of hold-over drugs, as denial after denial forced me to find legal help to face an administrative law judge, soon. All the while, I blend food with an immersion blender. I've lost count of the number of days I've consumed below the minimum calorie count science tells us we need to function, what our organs need to function.
Writing is harder than it seems. The cognitive decline is not ambiguous. I find fatigue and weakness redefined in this new (foreign) body I'm forced to live in. My doctor refused to write Medicare to help me fight my third-level appeal. I filed myself, and did my best to plead my case with medical science, giving them the authorization to review the medical and payment history, years of Medicare paying for this drug and its derivative, all with overrides won despite the same restrictions currently used against me. I lost.
Chemo patients, for whom this drug is currently approved, are not the only patients with oppressive symptoms. The diet I'm now forced on is the chemo diet, ironically; I would know. I used to make these types of smoothies for my terminally ill father. Any other food, certainly solid food, feels like I'm swallowing razor blades. My epigastric area (high abdominal area, just above my ribcage) feels as if I'm being sawed in half, stabbed from the inside or speared right after I eat but the pain doesn't know when to stop, the resulting fatigue and weakness unspeakable. I blend Greek yogurt with frozen fruit, Manuka honey and other nutrient-dense ingredients to try to both minimize pain and keep some kind of nutrition in my body. The pain does what it wants. This is better than nothing. I don't really know what to do. This is not meant to be long-term. Yet, I'm on this indefinitely, as my hearing date is not yet set.
The worst part? Because I am not a doctor and the review panel did not look up my medical records or diagnosis (as I wrote in my appeal) to see that my doctor used the wrong diagnostic codes that do not reflect my pancreatic diagnosis, I lost my appeal partly on an erroneous basis. Now, I suffer weeks more on the chemo diet. The pain is so high and worsens at night. Often, I hallucinate and break out in cold sweats, or at any point when I'm bed-ridden, to say nothing of the nightmares they cause. He will not correct this code problem, even when I made him aware of it.
My good pharmacist called a while ago to tell me about the Medicare representative who spun the tale about the technicality of the national drug code (NDC) that was causing the trouble, in the first place. That pharmacist, seeing the freefall I was in, told me to do everything they say and to see if another pharmacy might be able to get this drug to avoid further life-threatening impairment. He even offered to get me a bottle and he said he would take installments, even offering me some natural remedies, without upfront payment. He emphatically extended his help, but his hands were tied.
At the time, Medicare called and told me to order this drug at another pharmacy under the technicality of a different NDC code, one under which my good pharmacy had used before, and it failed to go through. At first, I found out that it would be approved but it would take four days to my good pharmacy's one day. The good pharmacy delivers via courier service. The other would require that I make arrangements. I was/am too weak to drive with any reliability and four more days of food deprivation would not be helpful.
Of course, this was all a useless exercise, as it would all be declined. There would be no drugs. Medicare declined it, citing every state and federal regulation it had at its disposal. I was suffering and waiting for nothing. It was the sickest cat and mouse game ever. A friend calls every day at noon to make sure I was still alive and calling lawmakers to see what could help me at the federal level. All those efforts only led to the forced administrative law hearing. But I was too weak and impaired to fight that alone. I'd have to find legal help. That is where I am right now.
I AM Rage. My doctor had the unadulterated gall to "congratulate" me for navigating the system he refused to help me fight. I am an unseen, unheard woman of color who has been silenced, ignored, treated like trash, literally removed from an ER by the police force, for the high crime of whispering, at one point, during my nine years of battling pancreatic hell. And he just joined that rank. Congratulate me? No. You did your worst and I am having to try to survive that, if anything, along with everything else the federal government and this "built this way" medical system is doing.
Congratulating me, sir, when you sat on your high horse and allowed me to suffer, is the hardest slap in the face you could render. I tire of brilliance and passive brutality passing for "sound medicine." I tire of Medicare and its branches doing the least and calling it good public health policy and service.
I AM Weakness. I AM Fatigue. I AM Exhaustion. I've seen doctors see me in this condition and tender me their "well-wishes" but not real help, no alternative pain control, no real compassion.
I've written to federal and state lawmakers. I wrote the White House. Disappointing responses, for failing to see how laws must change if they are to serve people who (everyone) wants...alive and well. People want to be alive and well, and to stay that way. But this is not a system built to facilitate that. I am living and weakening proof. If they wait long enough, I will be another kind of proof altogether, the kind for which you light candles and pass posthumous laws.
Disabled Americans are not just for election cycles. And this is not an issue of "red or blue politics." We need systemic changes that are specific and responsive to the sickest amongst us and for everyone, though the critically ill just have less time to waste. It is difficult to fight in this condition, but it does not mean I won't keep trying, until my last breath.
Compassionate healthcare is not what we have in this country for millions of Americans. It is what we deserve. Disabled Americans can not afford the life I'm being forced to live. To dangle us between a discompassionate medical system and tone-deaf federal and state regulations is an act of cruelty that, in itself, commands compassionate healthcare reform not just to save the lives and welfare of millions of Americans, but to give those Americans a real shot at living those lives--happy, full, productive lives--again, one day. I dare a single politician to argue against that. I dare them. My number is public. Invite me to the (House or Senate) floor, or the White House. I dare them.
I am but one of the millions, but I am one who knows, one who hears, one who feels the suffering of an injustice that ought never to be in one of the greatest nations in the world. Except that it is being allowed to exist here, and that is, perhaps, the greatest injustice of all--there are those who have the power to change this harm and do nothing while millions suffer. Do better. You simply must. The lives of millions depend on it.