So I’m writing on my phone again because I’m coming to you live and direct from the West Penn Hospital Inpatient Rehab Unit (aka IPR for us frequent flyers) and I’m still having issues with my typing fingers so this ends up being the least annoying way to do my favorite thing. That would be, of course, writing about the latest chapter in this my so-called effed up MS life I’ve been living for a while now. I mean, the material is endless. The thumbs are deft. The food? Familiar. Very very familiar.

You may recall that I voluntarily committed myself, oops I mean admitted myself to IPR because my body had given up the ghost lately by refusing to move as a body should. Especially a body with a fancy schmancy baclofen pump in its gut that is supposedly delivering constant bathing doses of the muscle relaxant baclofen all over my Swiss cheese spinal cord.

We assumed, Franzi my physiatrist and me, that the pump must be broken. Something had to be amiss! Come to IPR, he said. We’ll get ya fixed right up, he said. I fell for it. Again. I didn’t feel safe at home alone with such a useless janky body. Who could blame me for falling for these medical sweet nothings? I packed a damn bag. Actually, I packed three. I am no IPR newbie. I know how they get you.

I was admitted late Thursday afternoon when everybody here with the word “therapist” in his or her title agreed that something had to be wrong with my baclofen pump. A body shouldn’t move like my body moves. How could we expedite this test, they all wanted to know. I sniggered. We’re here at the IPR. HOSPITAL time knows no expedition. I was certain it would be at least a week before the tests could be arranged.

But then a miracle happened on Friday the 13th because yesterday was the day for the tests to see what was going on with my pump. The good old doc from interventional radiology was taking pity on the girl of stone. They were sending someone with a gurney and could I be ready in fifteen minutes? You’re damn skippy I could be ready.

We started my procedure(s) around 3pm after my full morning of therapy evaluations. This should have been my first clue that it was probably too good to be true. But I decided to be an optimist and kept a stiff upper lip (along with the stiff rest of me) whilst teams of people proceeded to hoist my petard on to a gurney, two procedure tables, back to another gurney and finally to a CT scanner with a quick pit stop in the Interventional Radiology waiting area.

Have I mentioned how stiff I am? I thought so. You can imagine how awesome it was for me to be on my back for over two hours being jostled around like so many heavy groceries. I started to worry when they told me that we had to do the dye test over again because Medtronic, the manufacturer of the pump I have implanted in my gut, explained why the first giant needle inserted into my gut to access the pump didn’t show any results. It was a special needle we needed to do the dye test. Why we found that out after the first dye test was done is anyone’s guess.

The nicest interventional radiologist in the world apologized profusely and explained that the Medtronic rep was on her way with the right needle and would I be willing to stick around and do the whole mess again because otherwise it was Friday (the 13th mind you) and he didn’t want me to have to wait for two whole days in my obviously unfortunate condition. I agreed to wait it out even though I felt the rumblings of needing to pee and my fear of being on my back for this long was real. I agreed to it because I was so sure this test was going to show why I was becoming the stone girl and I was indeed desperate to keep things moving along. I agreed to it. On Friday the 13th.

But the feeling of needing to pee just kept getting stronger the longer it took for that damn Medtronic rep to show up. I waited as long as I could before I spoke up. I couldn’t wait. I had to pee. But how could I accomplish this in my condition while stiff as a two-by-four on a gurney for going on my second hour?

A bedpan! We’ll get you a bedpan, they said as if that was the best idea anyone ever had. Jesus Christ on a cracker. A bedpan it would be because I physically couldn’t move. Two lovely nurses rolled me from side to side trying to pull down my yoga pants and my ridiculous bright blue Hanky Panky lace thong underwear which by now were so tightly clenched between the spastic muscles of my gluteus Maximus it amazed me that they didn’t bring out the jaws of life to remove them. But out they somehow snapped free and flew through the air landing on the floor right at the foot of the very nice interventional radiologist who was hooking me up with a second pump dye test. He walked in at that very moment to let me know the rep had arrived so we could scoot on back to the procedure room to get this baby done.

Of course my bright blue lace thong underwear on the floor at his feet was likely his first clue that I might need a minute. The bedpan stuck to my butt was the second. I willed myself to pee with everything I had because these nice people were working late on a Friday night to help me. Peeing quickly was the least I could do! It wasn’t happening. No pee in the bedpan. None. Zilch. But the rep was here and the radiologist was ready.

Wait! We can cath you! We have the technology. So what if we’re in the waiting room next to the ice machine that hospital workers in scrubs keep walking by to fill big plastic cups full with ice. We can drape you! This is going to happen. But my legs don’t bend, you might remember, so it took three people to empty my bladder in the waiting area of the West Penn Hospital Interventional Radiology procedure room. My bladder was emptied. I held back tears. I was going to have this test even if it killed me. We had to prove that this pump was messed up so someone could fix me and get me out of this hospital in under a month, as Franzi promised me we would do. I could handle this. I could handle anything to get the answer I was so desperate to hear. It took ten minutes to empty 85 cc’s of urine from my very full bladder.

We got my pants back on but the underwear (such as they are) weren’t happening with how stiff my legs were by now not to even mention my ass cheeks of solid stone. So they put the bright blue lace thong in a clear plastic bag and hung it from my gurney. They were very concerned that we didn’t lose my fancy underwear. How lovely of them. They do cost $22/pair.

I couldn’t think of anything but my mother who while doing my laundry for me one time waxed on for great lengths about how I should be ashamed to own let alone wear such ridiculous underwear. She didn’t care how comfortable they were! They were a travesty that no self respecting older woman should own let alone wear. Or hang from her gurney, as the case may be.

After all of this, the second test with the correct needle demonstrated without shadow of a doubt that my pump is indeed still connected to my spinal cord. There were no kinks or leaks or other sorts of malfunctions that would lead to my spasmania. Nothing. I had me a perfectly working pump.

I was dumbfounded. Heartbroken. As low as I’ve ever been. All of that. ALL OF THAT. So many days of living on the edge of personal peril assuming this admission was the right thing to do to fix my obviously broken pump. It would be worth it in the end, I told myself. I’d be fixed! I was obviously broken. I had no idea how really broken I would soon be.

I made it all the way back to my room in the T tower at IPR before I burst into the ugliest, snottiest, loudest wailing I’ve ever heard escape my face. Franzi was quickly walking up the corridor behind my gurney when he first heard the ungodly moaning. I’m half surprised he didn’t turn around and run away. I probably would have if I were him. Also at this time both interventional radiology nurses who’d been with me through this whole mess also started sobbing. One of them just grabbed me and wouldn’t let go and I was not even remotely weirded out by it.

How could this device be working? Why can’t I move? How would we fix this now? MORE hard work and fucking torture? More adjustments and potential Botox and maybe other stuff we haven’t even discussed yet? How could this be happening when the physical therapy team marvels at how rigid my legs are and openly comment that they’ve never seen a human being move with a body so stiff? What happens now? How can I bear any more of this? How will I live like this? How can anyone be happy ever again in this condition?

Well. None of those answers were forthcoming, I suppose that’s obvious by now.

Franzi assured me with his most earnest and sincere masked face that we will figure this out. We are not giving up. He’s not giving up on me like fucking TGS and his dismissive talk of lifts for when I’m totally paralyzed some day. I know Franzi means all of this and I believe him. He won’t give up on me. But how do I not give up on me? How do I keep doing this?

Listen. I know I sound like a grade A drama Queen but I sincerely don’t know how to do this. And yet. I keep doing this. It’s like living in some kind of fucked up parallel universe where it’s always Opposite Day. I get these lovely comments from people about how brave I am and how inspiring I am and it’s ever so kind and sincere but holy cats! I actually feel like I might be losing my mind. Straight up. No hyperbole. No movie of the week tears through pretty eyelashes but real loud ugly sobbing in a hallway of a hospital surrounded by strangers because, hello? We’re still in a pandemic! I’m here alone. The Corona virus is running rampant through this city and here I sit being hugged by absolute strangers in masks, sure, but contracting the virus isn’t even in my mind. I can’t even tell you how much I needed that tiny sobbing nurse to hold me tight.

I had taken my first Kesimpta shot that morning and it was fairly uneventful. Last night after the day I could never have imagined in my worst nightmares I had one of the worst MS nights of my life. I could barely stand up to use the bedside (which is actually beside my bed in the hospital and I was so happy not to have to use it up until last night). It was a terrible awful night. I knew I had a full day of therapy today looming and it just made me cry harder.

What’s the freaking point of exercising a body that won’t move? Why even bother? It felt cruel that they would force me to do it. It felt unconscionable.

But there was Kate at 9:45am tapping on my door a full fifteen minutes early for PT. I told her to go away and come back at 10AM and she was happy about it. She’s like sunshine in a five foot five lanky frame. When she does come back she wheels me to my weekend therapist, Chris, who asks me what I want to do today and somehow I don’t cry again.

“Well. My legs are barely moving so it probably makes sense to stretch me out and see if it helps even if it’s only temporary,” I said.

As we’re stretching together and she’s reminding me to breathe she says things like, “You really have remarkable range of motion for someone so crazy stiff. It’s amazing to see.” And, “You walked about twenty feet and that was harder than most people work who run actual marathons. You did that.”

I didn’t cry today at all. I’m here now. Franzi comes back on Monday and we will get to work figuring this shit out somehow. Because what the hell else do you do?

Oh. One other tiny bit of news came to me this morning from my realtor. The woman who’s been dying to see my house and was willing to see it in whatever form it was in made me an offer this morning. She wants my house. She loves my house. It was the best thing that’s happened to me in…well. A very long time. Now I can go to my new house knowing my old house will be in the best of hands (god willing and not counting any of my chickens before they hatch or anything) but goddamn. I needed that offer this morning. And there it was in my email waiting for me.

I have no idea how long I’m going to be here now. I am totally overwhelmed at the prospect of making a new plan to address the myriad issues facing my horribly unruly human vessel. I am overwhelmed at the idea that I’m actually in IPR again and tomorrow is Sunday and I have no therapy scheduled. I’ll have a full 24 hours without a goddamn thing to do.

Pandemics come at the worst possible times, don’t they?