Day 2 and 3: Stop Spending So Much Time on Bridges

The last couple of days have been a swirl of emotion and anxiety. Primarily, what should I do for money? I did not expect my arthritis to be what it is at this point. I expected my situation to be different.

 

My dad called six times between the hours of 6 and 7 in the morning. I ignored the calls because I know better. I had an interview that morning. I also struggle with how to gauge how an interview went. Anyway, I returned my dad’s call coming back. I didn’t have time to mention I was coming from an interview before he went on about how, “we are a family of deadbeats.”

 

I should not listen to his assessment, but the suffocating feeling of failure always lingers around me, like it is a thing, a thing that knows how right my dad is. And I start to review and analyze my choices and decisions, trying to pinpoint the moment where my downfall began. Was it at birth? Just a bad deck of cards? Was it the moment my white blood cells turned against the rest of my body? Or was it my choice that got me here? And I don’t see where I did anything truly awful. Where I was like, yeah, I think heroin is a good idea. That never happened. I did things, like take out student loans for grad school, and they’re shitty loans because I didn’t have a cosigner. I struggled with saving money because, unlike many of my peers, I have rather large medical costs each month. I worked part time jobs while in graduate school fulltime, until I couldn’t mentally handle it. It was the best decision for me and my mental health, but now I’m here, a dead beat.

 

But, that is what I need to work on. Being in the present moment. Not treading backwards, but existing, in the right here, right now. I frequently have to remind myself “Let’s cross that bridge when we get there.” I spend too much time on bridges from the past or bridges from the future. I admire people who have a balance. A balance where they are able to manage and predict future issues without living in fear of them, a balance where they enjoy the day. I am always planning, for the loss of my health insurance, looking at what feels like a huge looming disaster. I can never get out from under their shadow.

 

So, that is the goal for today. Be in the present moment.

 

I’ve been listening to this song a lot. Way Out by Forty Winks.

http://www.youtube.com/watch?v=KDCZWXHtwjc

28 Days of No Biologic: Adventures in Rheumatoid Arthritis

My rheumatoid arthritis is not good. It, apparently, has not been responding to the weekly injection I’ve been doing for the past ten years. X-rays suggest damage, damage that probably shouldn’t be there, suggesting my immune system has been a busy bee eating holes in major joints.

So, I have some options. One, being to go on another biologic, Humira, which does what Enbrel did, but it does it in a different way. There is a chance a new theory will work, but there is also a chance my arthritis is “particularly aggressive and does not respond to TNF blockers,” which is scary, because ten years ago, when I was diagnosed there wasn’t anything else. Pharmaceuticals have also been busy the last ten years and there is a new biologic blocking a new thing, IL6. They don’t really know why it works, but it does.

But, let’s make things a little more complicated, and add in the fact that my insurance is going to expire as of August 6, luckily I have one more option.

That option is a clinical trial for some up and coming IL6 blockers. There is no placebo, so I’ll get something. I am a great fit because I am a “TNF failure.”

Now, the reason I’m telling everyone all of this is because I need a project to get through this. I wanted my blog to be positive and funny. I want my posts to be humorous and clever. I want to be positive. However, in order to get into a clinical trial, I must go off the medication that has been failing, but keeping the wave that is a chronic illness at bay, for 28 days. I have taken this injection every week for the last ten years.

Prior to treatment, I was unable to put up my hair, fit my feet in shoes, or pull up jeans. I haven’t skipped more than one week of Enbrel in ten years. I show symptoms at a little over a week.

I get it. I understand the need for this, what the clinical people refer to as a “washout period.” The results can’t be influenced. They want to see what my arthritis looks like in all its aggressive glory so they can compare to my arthritis under the constraints of an IL6 blocker. It is actually a reasonable washout period apparently. Some studies request 3 months. Some studies won’t allow Tylenol while handling the washout period. The clinical people refer to this as “unpleasant and uncomfortable.”

Anyway, yesterday was my last Enbrel injection. Today is day one. Here we fucking go.Enbrel!