Time for a LONG Overdue Update (on me and the site)

First of all, I apologize for my long absence. I have had a rough few months, but that is really no excuse. I have missed writing and should do it more often. That being said, I am having more and more trouble with my hands, so I will be looking into a speech-to-text format to continue this blog.

Secondly, I have had to stop working and my disability (that I have written about before) is taking longer than expected to go through, so I am no longer able to afford the website (aspotforme.net). I am still doing the blog! Thankfully, wordpress.com is free and wonderful. So, for now, this will be my form of help to the invisibly ill community. I hope to continue on with the website in the future, but with everything else going on, this will do. Many of you also follow me on Facebook/Twitter and know that I have been taking a break from social media for a while, in large part to the information I will share below, but I wanted to take this time to update everyone on how things are with me and explain why the website is down (my gofundme is still available though).

I have finally gotten an official EDS (Ehlers-Danlos Syndrome) diagnosis! This may sound odd to many people. Why would I sound excited about a diagnosis? Because it means that the thing I knew, that I was sure of, is now accepted and understood by doctors as true. It means that they see with their eyes those words and know that I’m not crazy, or a hypochondriac. So, yeah… I’m happy about that.

But I’m not so happy about the fact that my RA has been getting worse, not better with the infusion treatments. They’re going to put me on a different biologic, but before they do they have to use something else to get me through the over three month flare I’ve been going through. It will drastically reduce my immune system, which is already pretty low, so they have to wait until the other biologic is out of my system. So, I wait. And while I wait, I am in terrible pain.

It’s almost funny, I go day to day thinking that I can’t imagine feeling worse than I do, but then the next day comes and I do. I did say almost funny.

So, I’m home a lot now. I get bored, so I play games on my phone, or watch Netflix (I’ve binge watched several shows now). But when I get the opportunity to go out, I am exhausted and even more sore for days after. It’s easy to find comfort in food, when I can eat. Food is not my friend right now. So, I find things that work and binge on those too.

Hopefully this isn’t coming across as super depressing or sad. I usually try to be at least somewhat uplifting. Right now, things are in a valley, but I have been through them before and made it out.

Moral of my story (for today) is this… I am still here. Even though my body is doing everything in its power to get me to give up, I’m still here. I’m fighting for my health, for my kids, and for my sanity (what’s left of it). 🙂

2 thoughts on “Time for a LONG Overdue Update (on me and the site)

  1. mrszirkel says:

    So glad to hear from you.
    Hurray for a diagnosis! You are so strong and brace for being so candid with your story. Keep it up because I know you comfort those going through similar things.


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