Today is Day 27 of the Art Apple A Day Retrospective – for information on the project click here.
Day Twenty Seven – October 27, 2010
Looking back 10 years ago today…
I guess “Halloween Week” consists of a brief sidetrack! My husband and I were big Colorado Rockies fans back in the early 2000’s when we lived in Colorado. We had a fifth share season tickets a few years and a tenth one year when we lived less than a mile away from Coors Field. There is really nothing like being at a MLB park!
Inspiration comes from all over when you tune yourself to its whims. But when I was in the worst of the “crisis years” before getting a diagnosis of Ankylosing Spondylitis/Axial Spondyloarthritis I was numb to my abilities and talents. One way I describe the utter devastation the disease was having on ME as a person was that I couldn’t see the colors. They didn’t come to me in dreams, I didn’t get excited by them. The creative part of my brain was taken up by pain and inflammation. I later learned that with an auto inflammatory disease that systemic inflammation means everywhere not just your joints. My brain and my thinking was affected too.
As the treatment started to work (which was years). I first was put on two different injectable biologics (which was about a year and a half between the two) and although I could feel a benefit, it was short lived. When my Rheumatologist moved me to the I.V. infusion biologic I stumbled upon an article (wish I could find it now) that stated that the best chance of the medication working was to get a high enough dose at a short interval and right at the beginning of treatment. So as the first few doses showed some improvement – I pushed/advocated for more mg/kg and at a 4 week interval. After 6 months there was finally enough in my system to adequately block the very high amount of inflammation my body was producing. In the following years my Rheumatologist would call me his “star” patient – the turn around was that dramatic. This is when we first thought I might be able to say that I was in fact in a medical remission of sorts!
I’m sharing this because I’d like people to consider that perhaps they are failing a certain biologic because they either haven’t given it enough time or their dose is too low. I’m not sure why Rheumatologists are reluctant to prescribe up to the FDA approved amount for A.S. it breaks my heart that some might find a therapeutic dose that works if these things were tried.
I’d also like to mention that over the 14 years (this month) I have had numerous times I thought the medication had stopped working. One point a few years ago, my Rheumatologist and I decided to check to see if I had built up antibodies against the medication – the very expensive test – was worth running. I had not built up antibodies which gave me the knowledge that I needed to take a look at what I was or wasn’t doing that had set me into repeated flares.
My approach over these 14 years (I’m the longest running on this med at Dr. K’s practice) has been to not fix it if it isn’t broken. I have no idea if some of the medications that have come out over the last 14 years would work for me or not so why would I risk finding out if my current biologic is working?
To tie this into my apple today – I feel like I win the world series every year that I am “well enough” to do most of the things I wish to do. But… EVERY year it is a very long season getting to that point. I work to be in this situation. I keep up with current information, I try new approaches, and then there is the element of luck and the positive attitude and projection which I believe are huge factors. So many pieces come together for me to find myself on top of things! I hope that gives people strength and courage to keep working for themselves, their good health, and finding a way every day to push for better for themselves – you CAN win against this disease. xO
To see my original twenty seventh post ~ World Series Baseball Apple ~ from 10 years ago click here or on the image above.
And the story will continue tomorrow…
Side Note: Tomorrow I’m going to share about the first few injectable medications and the first year on the I.V. med I’ve had such success with. (Please note: there are posts from the original project that name all these meds – but in 2020 I am choosing not to) If you are curious you can do a simple search on the site or send me a message on my Instagram account and I’m happy to share!