In February of 2018, I was diagnosed with Crohn’s Disease. I first started Remicade (Infliximab) which was unable to induce clinical remission. During this time, I was also taking Prednisone and Mercaptopurine (6MP). None of these drugs were able to make me comfortable and at my worst, I weighed 87lbs completely unable to walk. I stopped Remicade and started Humira (Adalimumab) in July 2018.
In this blog, I’ll be following the chain of events described in the Groundswell of my health’s dissolution. I’d intended to post it sooner, however, much of what happened to me is lost in fog. Added to that, I’ve struggled with details I should or should not share. For all the hand-wringing, I’ve finally managed to produce the second part of the hellish saga this past year has been.
By January 1st, 2018, I was 124lbs—31lbs down from my former 155lbs. Sean enrolled me on his insurance plan, a managed healthcare consortium, meaning I needed a new doctor. My third specialist referred me to my fourth within its strict network. Bordering on destitute in more ways than one, I managed to keep hope alive by reminding myself that 2018 was the best time in human history to be ill.
I’d managed to secure full-time employment following my termination, and fortunately, it was a work-from-home position. I was able to work from the comfort of my couch. This worked out in my long-term favor, as I was often too ill to put myself together. Later, I would be too ill drive.
However, this meant that I was slowly becoming more and more immobile with each passing day. This bloomed into a bevy of health risks I couldn’t even begin to predict.
Before I go on, I must again express the following disclaimer: our bodies are all different. The expression of our diseases will be different even if we share a diagnosis. What works for me may not work for you. I can only share my experiences in the hope that they will help someone who may need the information.
I know I’ve been suspiciously absent for months now. I alluded to medical hardships in my previous post regarding my birthday, but left it at that. I’d intended to start this much sooner than now, however, the whole of 2018 has been spent bedridden or in the hospital. I’ll begin with a story in three parts before moving on to what you can do if you or someone you know are in a similar situation. More than anything, I wish for this blog to be the resource I didn’t have when I needed it.
But please remember this: we are all different. Our bodies are unique. The expression of our diseases will be different even if we share a diagnosis. What works for me may not work for you. I can only share my experiences in the hope that they will help someone who may need the information.
Let’s start at the beginning.
Chronic illness is a ticking time bomb and your body is the fuse. It isn’t something you can prepare for, diet your way into or out of, or run from on the treadmill. For those of us with genetic factors, it isn’t a matter of if. It’s when.