It is true, the healthy don’t understand what it means to have a chronic illness. I used to get upset when my friends would say, “Hey, I’m...
As one might expect, navigating life with an invisible illness is one challenge followed by another. Beat one. Greet one. Every. Day. Nothing prepares you for the...
An NIH study points to autoimmunity as the underlying cause of more than a hundred life-altering, chronic illnesses and that 75% of those with autoimmune disorders are women. ...
Patient engagement is a trendy topic for healthcare providers – the latest spin terminology for “patient compliance” – as in how do I get patients to follow...
Zebra Retreat. No, it is not a new safari resort in Africa. It is not a ride at Disney. Not a new game rivaling Angry Birds. And...
“Living with a chronic illness is hard. Some days, navigating the healthcare system is harder. I am a nurse, looking at healthcare from the other end of the stethoscope. Join me.” As a young nurse in 2011, Sarah Beth Cowherd, RN began blogging about her experience in healthcare. She wanted to explore how a new generation of nurses were changing the face of healthcare through the use of technology and social media. Soon after launching SarahBethRN, Sarah developed a rare autoimmune disease called CIDP and autoimmune autonomic neuropathy…
“We all bleed red.” They say in the protests on the streets. Those in the Black Lives Matter movement. Those protesting the killings of the black men, black women, black children.
I watched the videos. Some I wish I could un-see, but I know to understand the horror, you have to see it.
The blood that slowly seeped into Philando Castille’s white t-shirt as he laid dying at gunpoint for a broken taillight, or a wide set nose–it was red.
The blood that stained the street from the broken femurs of the Frenchmen, the children on the ground in Nice that were hit by a truck–it was indistinguishable from Mr. Castille’s, it was red.
The white latex gloves on the black hands of the trauma surgeon in Dallas trying to save the lives of the police officers, ambushed while serving–they were stained red.
The drag marks, left by the leaking bullet holes from the bodies, as their friends, or strangers, pulled them from the Bataclan Theater in the back alley, gunshots still audible–they were red.
The floor of the Emanuel African Methodist Church in Charleston, South Carolina, where nine church members were gathered to pray, was stained red with their blood–the same color as the confederate flag that hung at the Capitol Building. The same color as the single rose that adorned the desk of State Senator, Clementa Pinckney, the day after his blood stained that same church floor.
The blood that dripped from the the forty nine bodies that did not make it out of Pulse nightclub on Latin night at one of Orlando’s best known gay clubs–it too, was red.
The dozens of people bleeding out in the South Sudan refugee camp from a mysterious illness that scientists can’t identify and can’t treat, much like ebola, but not–their blood on the dusty, war-torn ground is red.
“We all bleed red,” they say.
I spend a large portion of my life in doctor’s offices, in hospitals, and lately, in an infusion center.
Patients line the walls seated in recliners, hooked up to pumps attached to wheels. Needles in our arms or our chests turn to clear tubing that run up into rhythmically beeping pumps with bottles and bags of chemo and fluids and even red blood.
We have one bathroom, so when we need to go, we have to get up, unplug our pumps and try to walk to the bathroom. Sometimes there’s a line of people attached to pumps waiting for their turn, hanging on to the walls for support. Sometimes one of us will pass out. So we all try to let each other go first when we know we can stand a little longer.
We have a blanket warmer, but it can only fit a few blankets at a time. So when we get one, we replace it with a new one for the next person.
We bring water to the person sitting next to us who can’t get up to get his own.
We give tips on how to get through the symptoms that are surely coming.
We are a team–each fighting a different battle, but we fight together.
I have learned that at some point, all of us will end up in these recliners. We all will get sick and die–and if we are lucky, it will be when we are old and comfortable in our beds with a lifetime of experiences behind us. But, nothing we do will let us escape the reality that we all end up in the same place in the end.
And since I have been in the infusion center recliner, the things that once separated me from others no longer do.
We are black. We are white. We are hispanic. We are poor. We are rich. We have insurance. We don’t. We are old. We are young. Some of us die. Some of us survive.
We have become one, these patients and I.
No matter what medication we have hanging in those bags on the intravenous poles, that connect to those beeping pumps, that run down through those clear tubes to those needles in our arms–It all hits our blood. The same, warm, bright red blood.
You see, we all bleed red.
This week Cigna, a large insurance company, was sanctioned by the U.S. Centers for Medicare and Medicaid Services (CMS) for denying health care coverage and prescription drugs to people who should have received them(1). CMS accused Cigna of “widespread and systemic failures,” and said their actions, “create a serious threat to enrollee health and safety.(1)”
Medicare Advantage plans are just a small portion of Cigna’s massive portfolio of insurance plans and offerings, but this type of sanction brings into question the systemic operations and ethics under which the company at large functions.
For example, in a 2010 analysis of data reported to the California Department of Managed Care, the California Nurses Association found that Cigna’s claim denial rate was 39.6% compared to competitors such as Aetna at 5.9% in the same time frame (2). In almost 40% of claims for health care and prescriptions, Cigna denied coverage.
I can’t help but wonder who died waiting for medical treatment that the health insurance company didn’t want to pay for? If they had purchased a plan from a competitor, such as Aetna, would they still be alive?
I spent this past month negotiating a settlement agreement with a large insurance company I fought for two and a half years after falling ill to get the long term disability benefits provided by my employer. I filled out all of the requisite forms, gathered and mailed off all of the medical records. My application was “denied” but with instructions for filing an appeal. So I filled out more forms, gathered more records and received another denial.
More than two years into the process, my family hired an attorney who wrote appeals letters and sought information regarding their review process of this claim. The claim was sent to an “independent, unbiased third party” (who, by the way, was paid for by the company I was fighting) for review who determined that the case was valid and reversed the denial.
One week later, I got a letter from the insurer once again denying coverage due to a “pre-existing condition” that had nothing whatsoever to do with why I was disabled. So after two and a half years of telling me I was not disabled, they were now telling me I was disabled prior to my even applying for disability benefits. The letter also stated that there would be one last appeal after which they would close the case.
It took a second attorney who poured through reams and reams of information, including the company’s own internal communications documents and notes to unearth numerous errors and omissions, including information in my medical records that they at best overlooked, and at worst, choose to ignore.
So I fought harder.
It took two and a half years–after selling my car, moving in with my parents, spending every dime I worked so hard to save, and using all the energy I should have used to fight my illness to fight this insurer – to win the case.
I am pretty certain this company expected me to give up. They wanted me to not appeal for the second, third, and fourth time. They didn’t expect me to hire an independent attorney. And I’m still afraid of them because I feel like they can take more from me.
You see, for profit insurance companies benefit when they delay paying claims. Not only do they continue to receive premiums from policyholders for the insurance plans (generally paid for by employers), but they also receive investment income on the money they continue to withhold even if they eventually plan on paying it out after an appeal.
Back to my settlement agreement. It took yet another year to be granted Social Security disability, at which point I ended up owing the insurance giant tens of thousands of dollars in repayment. Although the money could be paid back in installments over a course of twenty eight years in my case, I also learned that insurers sometimes accept a settlement agreement for a lower amount if paid in cash now.
For a company that counts dollars in the billions, the money owed them was pocket change, if that. To me, it was so much more. Peace of mind. Security. My firstborn.
Due to my autoimmune disease, I’m not sure I will be able to have biological children of my own. As hard as that reality is to face as a thirty year old woman, looking toward a future without children at all is even more difficult. If I were to adopt a child, I would need a reserve of some $30,000-$40,000 at least to make that happen financially (considering I recover enough to be able to take care of a child).
Large insurance companies have entire departments dedicated to collections. They have endless legal access. Patients who have been sick and on disability for years like me can’t afford to hire attorneys to negotiate the settlement. So this time, I went into the arena alone prepared for battle.
To the insurance company, I was negotiating pennies. Me? I was fighting for a future. A firstborn, perhaps.
I’ll let you guess who won.
A new year comes yet again and we resolve once more. This year I propose to you this: we need a new resolution because this may be the year you get cancer.
At year’s end, we are challenged to think back on it, the highs and lows, to reflect and to take the opportunity to make alterations and revisions for the year to come. Resolutions come in many forms, but the most common are health and lifestyle modifications:
How can I live a more healthy lifestyle?
I want to commit to pray for the health of my children.
I want to exercise more.
I just want my grandchildren to be healthy and happy.
But having struggled with the depths of sickness for four years now, I can no longer hang my new year’s resolutions on health, because, for me, that may never come.
Not that health is not important, but if we elevate health above all else, what happens when we get sick? If health is the most important thing to us, do we lose it all when we get the diagnosis? Are we considered a loss once we become disabled? Is there life after disease?
Because tragedy strikes. Because babies are born with heart defects that require surgeries, and moms die prematurely of cancer, and teenagers are shot in parks, and hit by stray bullets in cars, and children get brain tumors.
If health is our resolution, if health is all we want for our children, for our future, what are we left with when affliction comes?
I understand that I am afflicted with disease this year. No resolve on my part will change that. So this year, I resolve to:
Let us strive, not for health, but for wholeness.
I have been in the dark for a few months.
Looking back, I think I have narrowed it down to a botched infusion of intravenous immunoglobulin, IVIG, that I received in November. Whether I received too much medication, or whether I received it too fast, either way, it made me very sick for two months.
I had a migraine for fifteen days. It was in my neck and I couldn’t move my neck from side to side. I also couldn’t sit or stand for longer than a few minutes or the migraine intensified.
My body reacted to the infusion in such a severe way that it caught me off guard and left me breathless. Literally. A couple of times I found myself head down on the floor having attempted to walk to the bathroom. I got tunnel vision and the room began closing in around me. And the darkness came in from all sides.
I began to lose my hair. I noticed a few weeks after the treatment while brushing my dirty blonde, or ‘grey’ if you are a close friend, hair that it was just pulling out in clumps. Mainly thinning in the front like a prematurely balding man. I really noticed while visiting a friend and her kids. She took a picture of me laying on the couch holding her sweet little boys in matching Christmas jammies. I put my hair in a messy bun on top of my head to keep the eight month old from pulling it. The first thing I noticed was the receding hair line.
The worst part of the darkness, worse than the pain and the suffering and the breathlessness and the distress, is the loneliness. The day after day of sickness that you can’t choose. That you can’t change. That you grow to accept. You learn to watch the world from Huffington Post and Facebook and picture texts from friends while your grey walls stay firmly planted to their foundation. And my friends wonder why I love my skull decor piece. I am my skull decor piece.
But then, this season is different. There will be no more gloom for her who was in anguish.
This time of year, especially for me, I’m waiting for one who would rend the heavens and come down to save me from my darkness. I’m weary in this world.
Those who dwelt in the land of deep darkness, on them light has shined.
Just as the sun peeks through the white bedroom window shade this morning, a light has come to the world to break my darkness. To split it open. To reform it. To use it.
For to us a child is born, to us a son is given…and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.
I think the worst of the worst is over for my months recovering from my failed infusion. I have caught my breath again. I am trying to build back my stamina. If I wear my hair down and flip it to one side, I think I can cover the thin spots. But more than that I can see the light.
And it is not my light, it’s His.
In one month, I will have been sick for four years.
I never thought something like this would happen to me and it comes with many challenges. I’ve found that in the midst of all the struggles– the IV treatment and the side effects, the pain, the constant doctors appointments and tests, the fatigue, missing out on life events, the thoughts of what my life could have been if I had never gotten sick– the hardest part of being sick is being alone. The real struggle is in the day to day living (if you can call it that).
After my last treatment, I had a bad reaction and was sick and miserable in bed for two weeks. The hardest part is watching the hours pass by from your bed and not speaking to another soul. The feeling of suffering alone.
I have a couple of people in my life whose friendships I would describe as tireless. They text me every day that I have treatment just to see how I’m doing. They know that the answers are always the same. Every. Time. But, just the little reminder that someone is thinking of you helps.
So one of these tireless friends asked me yesterday, “What can I do for you?”
I think, so far in the past four years, that is the best thing anyone has ever said to me.
My answer was tough. I honestly don’t know how to answer that question. But, I was able to reaffirm that just the simple check-ins mean so much to me. I hold them close and remember I’m not alone in this fight. I was also able to just tell my friend how much her friendship with me has meant. I was able to convey that I know it is tough to be my friend right now. That nothing ever changes and my answers to her questions are always the same. I was able to tell her that I know that would be frustrating and that I feel so blessed she has stayed by my side.
So thats my advice for you if you are struggling with what to say to a family member or friend who is sick. Ask them, “What can I do for you?” It will mean more than you know.