Never Ending Spiral Of Doom
Talking with some great friends of mine that also have Ankylosing Spondylitis, It really sank in what kind of spiral we are on. It’s like someone picked us up and sat us on a human sized spin the wheel. We got strapped in like you see in those dare devil stunt shows. With every spin we land on a new symptom or condition. To make things even more thrilling our wheel is connected to a motorized spin arm that’s pre programmed to turn the wheel ever 15 minutes.
Each peg of the board offers something different. A new medication, a new symptom, a medication side effect, a new diagnosis, a new doctor, someone telling you they don’t believe you, high out of pocket expenses, insurance denied a procedure, insurance denied a medication, denied disability, lost wages at work, relationship issues, family struggles. It just goes on and on with the possibilities. To make matters worse, you don’t get freed of one thing when you spin on to the next. They just pile on and increase in intensity the more you spin.
A Day In The Life On Our Spin Wheel
You landed on a medication that causes weight gain, now you spin off to the Doctor who lectures you about maintaining a healthy weight. You think you get lucky because you land on an ablation procedure to reduce or eliminate pain. It’s not so lucky after all, it cost $5000. Maybe it’s worth it, you have been going round and round and not catching a flare. Then suddenly a few short months later your nightmare is reality. You landed on pain. The ablation is no longer working.
Are you starting to catch on? Let me get a little more personal, my Rheumatologist believes wholeheartedly that I’m having cardiac and pulmonary issues due to AS or the treatment of my AS. Of course the first resort is to stop the medication that could be the culprit. The pain increases, but no other symptoms improve. The Cardiologist doesn’t have answers, nor does the Pulmonologist. Both disagreeing with each other. Maybe the heart and lung issues are connected, maybe not.
Everyone has an opinion but none of them offer answers, or options for beneficial treatment. If my cardiologist increases my heart medication then it lowers my heart rate dangerously low, which would mean they would also need to implant a pacemaker to prevent my heart from beating to slow. Then there is also my blood pressure potentially dropping dangerously low. If this occurs, I risk passing out or other symptoms. Nobody sees the point in pushing any further with testing, because they just don’t believe it will offer any answers.
It’s Like They Think We Don’t Know Our Own Bodies
Doctors take it upon their self to ignore test results because you simply don’t look sick. This prolongs treatment or leaves you being treated improperly. Rather than question why I had a chronic cough, shortness of breath and an abnormal chest CT, they toss some steroids at you and call it a day. Steroids cause weight gain, weight gain causes symptoms to worsen. Worse symptoms cause a decrease in activity. Decrease in activity causes worsening of symptoms and further progression of the disease.
This cycle never ends. It is a relentless hell that takes a much deeper toll than just feeling bad. Let’s also keep in mind, when we say we feel bad, I don’t mean I feel bad. Not like a cold or flu or stomach bug. No, I mean I REALLY feel bad. As in, I feel so bad I’m not sure how to manage enough functionality to get through the day. Endless fatigue that makes you so exhausted you don’t even have the energy to lift your head. When I feel bad, my pain is usually far greater than a 10, and this is nearly a daily thing. I don’t get real relief. Yet here we are still pushing forward just trying to make it each and every absolutely unbearable moment.
My body has learned to adapt to being so sick. Does that mean I’m not as bad, no it doesn’t. It means I can be much worse off than some people, before I show physical signs. My body has been functioning with a sporadic heart rate, going as high as 200+ beats a minute and as low as 30 beats per minute. Average heart rate for a healthy person is 60-100 beats per minute. My oxygen level drops multiple times a day. In to the 80’s occasionally the 70’s and even the 60’s. Average O2 saturation should be 95-100% regardless of activity in healthy people.
My Doctors think because I don’t turn blue my drops must not be real. I work in the medical field. I have seen really low drops without a person turning blue. People with COPD don’t turn blue, they adapt to functioning with lower oxygen levels. In fact it’s argued that providing COPD patients with high flow O2 can be more dangerous than beneficial. It is incredible what our bodies can adapt to, but that doesn’t mean we shouldn’t be searching for answers to why the body is doing what it does.
Don’t Ask Me Why I’m Not More Positive
This all leads to so much frustration. We need a better health care system. We shouldn’t be told to just get used to it. We should be helped at all cost to find answers and treatment that is successful. In fact, it shouldn’t be about treatment, it should be about finding the cure. I won’t give up. I don’t care how many Doctors don’t believe me. I will fight until change happens. I will fight until we have answers.
The way I feel every day is taking such a toll on me, you are lucky if I smile at all. I still smile, I still do everything I can to help others. I still find positivity in things. I treasure the small things more. I feel angry, I’m allowed too. I get depressed, not only is it a symptom of AS, heck just being chronically sick in general, but I’m allowed too. That’s the thing, I get to grieve in all the ways that come along. Yes you do grieve. You literally loose what you knew as life.
The things we endure, we are warriors, we are survivors, we are fighters. We endure far more than a body should ever have to.
Join me in this fight. A fight to Kick Some AS. We all need a little help now and then, join me in Giving Spoons To Kick Some AS!