I know. It’s been forever since I’ve posted or updated and I have no real excuse for it other than that being in this hospital has thrown me off my game so hard that I can’t even type all that well. It hurts my arms. My fingers that usually fly over the keyboard are typing nonsense. I get weird pain in my neck the minute I try to bust out some words so I just haven’t done it. You guys know me! I spew. I don’t plan and outline and edit (very much anyway). It’s just the way my writer brain works. It’s also a matter of not having a comfortable set up for writing. My home, on the other hand, is comfort made of bricks and mortar (and lots of pillows lets just be honest), so when words start bouncing around my head I find my spot and let ’em rip. It’s not working for me here. I have the bouncing thoughts but a lack of ability to get them on a page. With all of the things freaking me out over the last three weeks, not being able to write about them might be the biggest one. So, I thought I’d take a stab at a quick update? No promising anything profound. You’ve been warned.

I’m smack in the middle of week three of inpatient rehab. I had myself mentally prepared(ish) for two weeks away. I didn’t have myself mentally prepared for this. I haven’t been home since Valentine’s Day. I’m obsessed with an all-consuming desire to be back in my home, with my comforts and my beasties that sometimes just makes me burst into tears without any warning whatsoever. At the same time I’m obsessed with not leaving this place until I am stronger and more able than I was on February 13. It’s not that high of a bar since I’ve been living in Hot Mess City for so long I almost don’t know how to define my expectations. But this process of recovering from the baclofen pump surgery and weaning off of the massive doses of oral muscle relaxers I’ve been taking for the past 18 months or so AND programming my new internal hardware kind of created the perfect storm for a very long hospital stay.

On the upside? I’m 100% oral muscle relaxer free as of last night. I have no idea what I’m going to do with all of the extra space in my medicine cabinet or my bedside table drawer. I also have no idea what I’m going to do with all of those pills that are still in those places when I finally do get to go home. I almost can’t believe that it’s over. No more pills. No more countdowns to the next dose that may or may not work even a little bit. That is reason enough for me to declare this great baclofen pump experiment a rousing success. Another huge thing…my spasms have been gone completely almost from the first day post-surgery. Shocking. And so so wonderful it’s hard to articulate how relaxing it is not to be in constant hyper-vigilance waiting for the next spasm to hit. I can sleep with my legs straight out!

It is indeed super weird to feel this machine, this foreign body in my belly. I’m certain I will get used to it over time but so far it’s just another weird thing to adjust to. Hey, this IS MS after all. I should always expect weird. My staples are out finally and that also feels kind of wonderful. I have sutures on the front and back of my bod. For those not squeamish here is a look at the front with staples and the back without them.

The one on the front with the staples reminded me of a caterpillar that might turn into another butterfly when the staples were removed. Alas, it’s just an ugly scar.

I do two and a half hours of OT and PT every day. It’s exhausting but to say I was weak would be a gross understatement. When I got here after surgery, I couldn’t stand up. I would just crumple to the floor. That freaked me out big time but it was to be expected for lots of reasons. First, I was on multiple oral muscle relaxer meds at high doses and I was getting baclofen through the pump all at the same time. Second, I was in bed flat on my back for 48 hours after the surgery. That’s not good for us MS’ers as I’m sure you can all relate to. And finally, and perhaps most obvious, I’ve been mainly sedentary for almost 18 months while I struggled to move around in my house. I’ll write more about my OT/PT journey once I get out of this joint. Which brings me to my next point in this very short post.

My entire team (OT/PT/Pump Doc/Nurses/other various medical folk) gather every Thursday for a group discussion to determine my fate for the next week. As of now, it’s kind of obvious that I’ve not been given the green light to go home. Tomorrow will be the next time I get news of my fate and I’m nervous as hell partially because another week in here might drive me straight up insane. I miss my home (and my kitties!) so much it’s almost another physical pain to deal with in therapy. Weekends here are deadly. I’m not allowed to do anything myself beyond sit in a wheelchair or stand up in front of the wheelchair holding on to a walker. There’s no scheduled OT or PT on weekends. Visitors are great! But they also remind me of where I am and where I want to be. Weekends here are terrible.

So…I will await the verdict. I will keep working my ass off. I know I’ve come a long way but I also know I have a lot further to go. The pump dosing is still being tweaked and it’s most convenient to be here while that’s happening so I’m not having to get to the doctor’s office every other day. There is a pretty good argument that I would benefit from another week, even I can see that. It’s a weird place to be in when you can’t really decide what the right thing to hope for is. But that’s where I am.

I’m hoping you won’t give up on me while my posting is so rare but I’d understand if you did. I’m going to sign off now and stand up for a while. WOO WOO!

Until next time, BBADdies, be well. We’ll be talking more regularly soon. I promise.