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Monday, July 30, 2018

Don’t Treat My AS With Your Opinions

Your Opinion Doesn’t Out Weigh Fact

I have put this off all day, because I don’t know how to feel or what to think. I had my follow up with Pulmonologist today, to get my test results. If you follow me, then you will recall the phone call...they said nothing showed up on my overnight monitor. Well, that was a lie. I don’t understand the purpose of telling someone things are fine when they are not. 

On arrival, when they do my vitals, my O2 sat read at 88%. I’m thinking, good...they can see it for themselves now! Wrong! So the Nurse Practitioner says, everything came back normal. I asked to see the results. He pulls up my overnight monitor and says, well those drops you see, I don’t believe those are accurate.

Wait...what? So there were drops? Yes, we picked up about 4 or 5 in the 3 hours it monitored for. Like I said, I don’t believe those are accurate, so your results show no findings. Hold on, why is it you don’t believe they are accurate? “I just don’t!”
Yes, that’s what he said. No medical explanation, it’s just his opinion. 

Well, I’m sorry but your opinion doesn’t out weigh facts. For a year now I have been trying to get Doctors to understand the change in my life. I used to hike, now I can’t climb a flight of stairs. Last year, I participated in a 5k event, completed a 52 hike challenge that covered Hundreds of miles, completed a separate 365 mile challenge, two 100 mile challenges, and a 1 million step challenge in 60 days as well as a 1000 mile challenge. That’s just a small taste, I hiked hundreds of miles aside from that. I traveled and was actively hiking on average twice a week anywhere from 15-25 miles in the week. 

If Only I Looked As Sick As I Feel

I also had the results of a High Resolution CT Scan at this appointment.  Those results showed Thickening of the wall, but he gave no clarification on that. By this point, I was already frustrated and not thinking about asking for more clarity, rather my focus was on getting him to understand something isn’t right. 

We live in our bodies everyday, we know first hand when something isn’t normal, for lack of better words. We have to advocate to people who have no understanding of AS, people who don’t believe us, and to the people who are supposed to be there to help us feel better. We shouldn’t have to fight this hard to get an understanding and whatever it takes to get answers. Why are Doctors so quick to say they don’t have an answer so that’s it, they can’t do anything else. 

I’m Demanding Proper Healthcare 

I get a lot of responses to my fight for adequate answers. A lot of them not easy to hear, very hurtful and demeaning. I have had Neurology, Cardiology and Pulmonology and my Primary all give up and say nothing is wrong just because they don’t have an answer. That’s not acceptable. They should go to any lengths until they have the answers, they are the Doctors. Instead they throw medication at me and say, they don’t have an answer. 

I refuse to except that. So I open my mouth and demand they look. I tell them they don’t get to give up, I’m watching my life fade into nothing, and they don’t get to contribute to that, they are supposed to fix it. This shouldn’t be the only way to get answers. So far, that’s what I have to do though. After pressuring my Primary, I made it to a Pulmonologist. Now because I pressured my Pulmonologist, I get a repeat Lung Function Test, and suggestions that I get a referral to a University. 

Why Isn’t The Logical Answer The Easiest

I just can’t wrap my head around it all. Even when they see my heart rate spike, or my O2 drop, they want to believe it can’t be real. Since when did the standard practice become convincing the Patient its all in there head? At what point is that productive healthcare? I get it, tossing medication at us lines someone’s pockets. Repeat visits because we never feel better, it’s all a money game. I just can’t understand why it became so common place to ignore the cries of a patient that something isn’t right, when clearly test reflect that. 

Not only test, but symptomatic complaints as well. It’s difficult to muster up the mindset to seek out medical care when things get real bad. The days and nights of relentless vomiting. Heavy pressure in the chest. Heart racing, short of breath. Pain elevating rapidly. How do you pull it together and walk into a Doctors office that’s just going to tell you nothing is wrong? 

I’m Getting Used To It

You sit in Emergency Room, Urgent Care, and Doctors offices alone. Just hoping some random friend will actually respond when you text to vent about the way you feel and the dreaded wait time. The fear you try so hard to hide behind. Then it slips out to those you reach out to. All in hopes to find a shoulder to lean on. Instead, you stare at your phone and nothing appears. You keep a smile and say “I’m fine.” It’s all an attempt to pretend the loneliness isn’t real. 

Months, go by and people ask you if you really are that sick? Maybe it’s in your head. You are far to pretty to have anything irreversible. You are so young, there can’t be anything wrong with you. Others opinions filled with doubts and lack of support. They don’t even have an ounce of medical explanation as to why, it’s just not possible that’s all. Friends, Family, and Doctors too. You say that’s okay, I’m getting used to it. Used to what? To nobody believing me, to doing this alone, to not having answers. 

If you take nothing else from this, let it be that someone you know, needs you to just be there. They are to scared to ask because of constant let down, but they just want one person to not judge, not question. Just sit, hold their hand, wipe away the snotty tears. Or stand up for the most courageous battle they fight and let them know you got their back. Sometimes it’s the little moments, other times it’s realizing how great the need is. 

I’m not in this alone. There are thousands out there just like me. Dealing with the same thing I am. We need others to stand up, help us be heard and let us know we are not fighting alone. Even when I’m surrounded by people, I feel utterly and completely alone. I’m scared of my world, and I don’t want others to feel this way. So I fight for change. True change. We deserve to be heard, seen and treated, we deserve to live as healthy a life as possible. 

Please stand up and help us fight to Kick Some AS! Together We Can Kick Some AS! Giving Spoons To Kiyck Some AS! 


  1. Awesome response! After being cared for, and taken seriously for 25 yrs., we relocated from Michigan to Texas. Suddenly my symptoms look like drug seeking behavior! I don’t even take or want opiates as they don’t work for me! But I’ve been given prednisone burst packs 3X in a month or 5 weeks with no effect. There’s no next. Now for the MRI and bone density tests. Not that it’ll show them much. So I ask what’s next and they gave me a handout on reducing inflammation. I’ve had Ankylosing Spondylitis, PsA, rheumatoid and Osteo arthritis’, fibromyalgia, and on... There has to be a way to help the pain!! I think the current issue is sciatica, but I diagnosed that, not them! It is unrelenting and burns and hurts. I’m 65 years old, with a few degrees and a strong sense of self. But the Pain wears me out.

    Stay strong and accept what your body is telling you. We don’t fit into a neat little definition of symptoms and we have to find a way to tell them everything or what could be missed?! Hang in there and keep a notebook/log with everything in it. That’s the only log I believe in.

  2. I do hope you find relief. I agree there has to be something out there. It’s just so unfair