Ahh, there it is. Right shoulder – I must have slept on that side for part of the night. Feet - they look like I was performing a ballet during the night and they are ready to go en pointe, with my toes curled under, looking like corn kernels on a cob.
Time to stand. “Hello, lower back, head and legs. I almost thought you weren’t showing up for today’s party. We’ll all start moving toward the bathroom as soon as our feet uncurl enough to let us stand without help.” I’m exhausted and I haven’t even started getting ready for the day.
I have Systemic Lupus Erythematosus or Lupus. Lupus is an “invisible disease”, meaning I don’t look like I’m sick. I look perfectly healthy on the outside, even though my insides are like a crumbling tenement. In fact, due to my frequent low-grade fevers and the butterfly shaped rash that comes and goes on my face, I look downright healthy.
But, I’m not healthy. Lupus is a disease that fools your immune system into thinking that parts of your body are “the enemy”- sort of like if you had a kidney transplant and your body rejected the kidney. Except Lupus can attack just one organ, three organs, or your entire body.
We are constantly exhausted because our bodies are struggling to maintain homeostasis, keeping things in balance. In fact, it’s so busy, that when a nice little cold bug comes around, we don’t have much of an immune system left to fight it off. Your cold that we picked up (we know you didn’t mean to leave it lying around) becomes our bronchitis or pneumonia.
After twenty-five years, I had to give up teaching full-time because it was too hard on my body. This was a huge blow because I taught in an inner-city school and loved it. This blow also came after not being able to be in the sun and/or heat (no beach, walking, swimming during the day, bike riding with your kid, etc.) To manage my disease, I had to understand that when I felt tired, I had to rest. There are many things I miss because I was in too much pain to participate.
The pain. The unrelenting pain. When I tell a doctor that I’m in pain – and, if they aren’t too familiar with Lupus, I explain that I live on pain levels 2-6 (out of ten) every hour of every day.
One of the areas where Lupus hits frequently is my central nervous system. I’ve been in an ER trying to explain the dizziness, headache and lack of speaking and cognitive symptoms I get when I develop cerebritis. My cognitive level decreases as the inflammation increases and soon I will have difficulty answering the resident’s question, “What makes you think you have Lupus?” for the fifth time.
Now, I just treat cerebritis at home with a large dose of prednisone and wean the prednisone back down to my daily dose of 10 mg. I let my rheumatologist know what I’m doing the next day.
Believe it or not, I want to have a good quality of life despite the things I can’t do. I just keep reinventing myself. I found a job where I could teach third grade for just three hours a day in an air-conditioned school, with a principal who understands that sometimes I can’t come in.
But the pain still must be dealt with, and it looms larger every year. I have taken prednisone every day for the past seventeen years. I can no longer take NSAIDS because I’m in stage three kidney failure. Tylenol does nothing. Four to five days a month I take two Percocet when it becomes unbearable. I, along with hundreds of people I know with chronic pain, have stuck to those eight-ten pills a month for at least twenty years. Some have needed additional pain management, but I don’t know one person who isn’t careful about how often and what dosage they take.
Since I know hundreds of people with Lupus and other “invisible diseases” through websites, Facebook, and who I advocate for, I know of many who can’t get hold of their pain meds anymore because of the opioid epidemic. Doctors are just afraid to prescribe them, and I can’t blame them. I have friends in far worse shape than me who are suffering terribly.
Because of the estimated 15% of people who get addicted, the remaining 85% can’t get meds that are needed. Don’t we count for something? Three weeks ago, a young woman with Lupus killed herself. Her doctors had stopped prescribing her pain medications. Isn’t she as important as the 15% who have become addicted? What about the young man who had interstitial cystitis? He could no longer get his pain meds, either. He jumped out of a window. This is just the beginning, folks.
I truly have sympathy for those who are addicted to pain medication. I hurt for families that have lost loved ones to addiction. But people with chronic pain who are not addicted to pain medication are being punished for others’ addictions.
Certain pain meds are already being limited by pharmacies despite what a doctor has prescribed. Why do Walmart and CVS think they know more about my condition and pain than my doctors? They’ve started limiting Oxycontin. What will come next? Percocet or Vicodin?
When you see a television show that has a story line about how terrible pain meds are because of addiction, or a news report about the same subject, please also think of us. I’m sure that, in time, this restriction on pain medication will swing back to center, as most extremes generally do.
I just hope I’m still alive when it does.
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Susan Leigh has had Lupus as well as other autoimmune diseases for forty-eight years. She is an advocate for people who have been diagnosed with chronic diseases.
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This blog post was curated and/or edited by The Ardent Reader, Esther Hofknecht Curtis, BSOL, MSM-HCA. The views expressed in this blog post are those of the guest blogger. Visit her page at www.parrotcontent.com for more information.
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