It has been SO long since I’ve posted anything – and with good reason. My last post dabbled into what we’ve been dealing with this last year or so, after the pandemic turned all of our lives upside down. It’s hard to know what to say when others are going through so much.

But a lot has gone on since then…life has gone on, for those of us lucky enough to make it through this. I think of all of those who didn’t make it often, and those who have had to figure out how to move on without loved ones. Needless to say, my heart goes out to you all.

As I said, life moves on. Time stops for no one. Neither do chronic illnesses, and all that that goes with them.

Today, I wanted to do a quick update on what’s been going on for me the last year; specifically, a very important milestone passed without any mention. My 3rd Rebirthday.

I feel like that day sneaks up on me each year. Not the day itself, as I always have something planned – it’s my husband’s birthday, after all. 

This one looked very different for me – we were not on our 10th day of quarantine, for one. This year was also a little different in that I’m not waiting on an MRI and its results with baited breath. 

That’s the biggest change this year – with three stable MRI’s, we decided I’ll cut back to those every other year. I also see my neurology team half as often now because my disease progression has halted. The same goes for my primary care team, which helped keep tabs on everything going on with me that wasn’t Neuro related.

I can’t begin to tell y’all how much peace of mind that lack of progression has brought me. The first few years after my diagnosis, it all but consumed me. My entire life, every daily task, revolved around doing whatever I could to feel better. Now that I do, I still keep it a priority, but it isn’t my first and last thought every day.

Of course, I’m still learning to navigate this normal of mine – and now that a diagnosis of hEDS has been thrown into the mix, it’s a little more to manage, but nothing I haven’t been able to handle. A few more PT exercises, but manageable.

Like all of you, this pandemic has thrown me for a major loop…with the vaccine being so readily available in the U.S., I can finally see the light at the end of the tunnel.

I’ve got more regularly scheduled posts ready for the rest of the year. The next one will be an update on how the last two years on Rebif have been. (How has it already been two years?!?)

Once I’m better recovered, I’ll go into my newest, acute diagnosis…Shingles, anyone?! It’s not just the 50 and over crowd, as many like to believe. By the time the chickenpox vaccine became available, I’d already suffered through it. Like the rest of those who had it, my chances were 1 in 3. Did I think I’d get it? Absolutely not. Then again, I never figured MS or hEDS was in my future, either.

I hope you’re all doing well, and ready to enjoy the summer!

Stay safe – until next time,