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“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…
I recently took a trip to the Norfolk municipal building to visit the Utilities Department to get the water turned on in my new residence.
I sat waiting next to four others in office chairs arranged in a semi circle with flickering fluorescent lights overhead. We were all waiting on just one person to help us. An unlikely cast of characters: there was a middle aged Indian man who owned a number of properties around Norfolk, a 30-something black man with a limp who allowed a young single mother bus driver on her lunch break to cut him in line, and me, a former nurse turned patient on social security.
Come to find out, we had each been on disability at a different time in our lives.
The middle aged Indian property owner came from India when he was 19 with 300 dollars in his pocket. He worked hard, long hours everyday. And he worked his way up to be able to provide for his family and manage a number of apartment buildings in Norfolk. He told us like he would tell his children, “If you are willing to do the hard work, you can make it here. The American Dream.” Although he did mention that after a severe leg injury he was on disability for a few years while he recovered, he made sure to drive home the point that he got back to the hard work as soon as he could.
In the bleak winter that is life with a chronic illness, it is hard to remember that there is, in fact, a spring. The snow begins to melt, and flowers do actually bloom.
Good things can actually happen in the midst of a struggle.
And I have known a great struggle over the past three and a half years. I became sick very suddenly just weeks before my twenty sixth birthday and went downhill fast.
I struggled with finding doctors who took me seriously and being misdiagnosed and prescribed the wrong drugs. I was told I was, “being highly over tested” and asked, “Did your boyfriend break up with you?”
I struggled for a year and half, a short time for most patients like me, to get a diagnosis. Once diagnosed, I’ve struggled through a treatment option that leaves me very sick for a week or more each month.
There are no shortage of chronic disease complications when you deal with chronic illness and complicated treatments.
It has been nearly two weeks since my last treatment and my IV puncture bruises have withered from a dark black to a morose yellow. You can still see the red puncture marks sitting like a bullseye in the center of the fading discolored skin.
But the side effects have been less slow to wear.
Last month, I spent 15 days after my treatments with a killer migraine and in a daze from the copious medications given to me at my 2 back to back ER visits.
This month, the headache faded after a quick 5 days. Perhaps it was the IV saline that my doctor ordered to possibly counteract the previous month’s debacle. Perhaps it was the gatorade that I didn’t stop drinking for 3 days straight (one before and two during). Or perhaps it was the praying, or pleading for that matter. Pleading that I would have a better month.
But each day of the last two weeks has felt like a toil. Short of breath when I stand. Muscles trembling with little resistance. My mouth muscles quivered at the audacity of the glass of water to ask it to work.
Each day I get weaker from laying. I try to sit up or walk downstairs but it feels as if the air has the same resistance as water.
Today, the symptoms are finally fading. Another two weeks gone so fast–and yet, so incredibly slow.
With any luck, I’ll have two more weeks of feeling better before the positive effects of the $30,000 dollar a month treatment wear off and I’ll find myself back in the infusion center recliner with fresh new black bruises wrapped with nonstick tape.
Sometimes it feels so futile.
I realized this week how few choices I have–if any at all.
I’m too afraid to stop the treatments that wreck havoc on my body for fear that I will get worse and regress to the state I was in before I started almost a year ago now. More scary than getting worse is the fear I will never get any better than I am now. At the same time, each month, as the time approaches for my treatment, I’m filled with dread to do it all over again. Will this month be better or will I struggle for weeks with complications?
The prospect of continuing treatment “indefinitely” scares me endlessly. What will my life look like? Can you call it a life?
I feel more like a clock you can set your watch by. Treatment, side effects, a week maybe two where I can visit my friends for an hour or write, and then the slow but steady decline of physical ability that pulls me harshly back to that recliner. And start all over again. Wash. Rinse. Repeat.
My hope is in this thought (and please excuse the unapologetic Hellen Keller quote):
“Believe, when you are most unhappy, that there is something for you to do in the world, so long as you can sweeten another’s pain, life is not in vain.” -Hellen Keller
So I press on clinging to the possibly futile thought that I can get better. And hoping there is something for me to do in this world if not.
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 coming in to town, want to meet for dinner?” Or, “We aren’t going to be out long, we’ll just be sitting there, you can do that right?” I wasn’t upset in an angry way, I just felt misunderstood and invisible. Dismissed. Isolated. Alone.
You really have no clue what I’m going through, do you?
When I was healthy, I didn’t think twice about how much energy it takes to do the seemingly simple activities of daily life. With autonomic dysfunction, getting out of bed is a task. When I stand, I feel like the floor is pulling me down (as if I could get any lower). I feel the immediate need to lay back down. If I don’t, if I push through and try to walk downstairs, I get short of breath and lightheaded. My blood pressure drops because the nerves that are working to move the blood from my lower body up to the heart aren’t functioning properly. The blood pools in my legs and lower abdomen which reduces the amount of blood that can feed oxygen to the heart and brain. The body tries to make up for this loss of blood volume and tells the heart to beat faster. My heart rate is as high as a healthy person’s when they work out. And that’s just standing.
We reached downtown just as the sun began to set. San Francisco at dusk is a bustling place. Brakes squeaking, fluorescent lights flashing and illuminating windows of bars and restaurants. Rush hour traffic cramps the streets. Street lights begin to light one after the other. You can catch a host of different people walking during this time. A young twenty-something wearing a beanie and a messenger bag, coffee in hand, surely heading to a poetry reading or open mic night. The business savvy woman in heels hustling to the BART station to catch her train home for the night. And, every now and then, you catch three girls on road bikes swerving in and out of stopped traffic trying to get home.
There are obstacles on every side: cable car tracks that line each street attempt to catch your thin wheels, taxi drivers whose patience has run short, and the steep hills that define the city. As the orange light of the setting sun breaks through the crevice between the grey cement sky scrapers, I give up. I get off my bike yelling to my companions, “I don’t have health insurance!” I thought I was cutting it close when we were descending the steep hill into Sausalito past the Golden Gate bridge. The wheels were spinning so fast as we accelerated downhill, it was hard to tell if I was still riding the bike. Or was the bike riding me? One patch of sand or small rock and us beginner bike riders would have met our Maker. After riding the ferry back to the city and attempting to pedal fast to make it home to Nob Hill by dark, I had enough.
The past ten years of my life were studded with risky endeavors: white water rafting on the Nile, bungee jumping over gator infested waters, and getting caught in a rip tide that the next day killed six surfers. Surfing waves (or at least attempting to) that were too big and hiking unknown trails in flip flops and sleeping outside in hammocks and getting lost in strange countries. Anyway, a little road biking in San Francisco seemed tame enough.
But things were different now than in the past. A simple yet substantial difference: health insurance. I was twenty five years old and I needed to be responsible. If my wheel caught in the trolley tracks causing my bike to tip and my leg to scrape against the pavement, I would have to incur the outrageous expense of the emergency room visit and subsequent treatments. Money that I did not have. Needless to say, I jumped off my bike and began pushing it up the sidewalk. My friends were laughing at me as they continued on their bikes all the way home. I didn’t care. I could not risk getting injured knowing that I didn’t have the means to clean up after my mistakes.
Knowing now what I didn’t know then, I would have continued on my bike ride. Knowing that in less than a year I would no longer have the physical ability to ride a bike, I would have finished the journey. I miss the laughter of my friends as we barely escaped hitting a taxi. I miss the burn in my thighs as I pushed up California leaving the Financial District in my dust. More than anything, I miss the freedom I had, freedom from the pressure cooker of health insurance and medical bills. Freedom from the thought that I may never be able to return to the exciting life I once had. I miss the freedom I had before the sickness.
And I miss the bike rides.
Being sick changes you.
For a host of different reasons, I’ve caught myself daydreaming recently–remembering moments in my pre-sick life where I felt normal. My sense of normal was pretty ridiculous. I used to travel a lot.
I’ve been white water rafting on the Nile River in Uganda.
I went “surfing” off the Pacific coast of rural Nicaragua.
Spent the night in the executive lounge in the Amsterdam airport.
Strolled the tea fields outside Nairobi, Kenya.
Went deep sea fishing in Aruba.
Napa Valley. Sedona. Chicago.