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That’s an actual representation of me trying to sleep last night.

I didn’t know when this whole MS adventure started back in December of 2015 that I would come to have such a complicated relationship with Vitamin P, or as you may know it, oral Prednisone.

I recalled in one of my last posts that 2018 had me hopped up on the juice at least 4 times – call it once a quarter if you will, and it felt like a lot. You know how it goes! Prednisone can make you feel like a real girl again, or IV solumedrol, pick your particular version of the poison. It can also make you fat, distort your face, give you osteoporosis, mess up your liver, hike your blood sugar and blood pressure, make you buzz around like a junkie on speeders and basically ruin important things inside your body. But yeh. It also makes you feel awesome. It’s a conundrum.

When TGS gave his somewhat less than enthusiastic approval recently to try one three-day round of high-dose Prednisone to try and kick my Lemtrada ravaged body into something more operational, I was torn. The thing is, this situation is not just about my MS. I know this nose dive I am currently experiencing is a result of my treatment. I can see damn well in my first month labs that the drug killed off most of the badness, as it was supposed to. Deciding to dive in and take another hit to my immune system for perhaps a modicum of relief kind felt like being asked to dance with the devil by the cold moonlight.

I got the script last Thursday. But I didn’t take it right away. I was torn. Truly torn.

Staring down three days of 1000 mg per day of oral prednisone is no small thing when you know the upside is limited. I’m not gonna lie. After I got the magical pills after an email exchange with TGS I decided to hold off on starting the roids until Sunday morning so I could be quasi-functional for a big client meeting tomorrow. Priorities? I guess but being outside-world-worthy has been fleeting these past weeks.

My post-Lemtrada body is struggling hard, y’all. There’s a lot of pain in all the places. There’s legs that refuse to operate or lift very far off the ground at all (you’ve already read about the occasional paralysis). I’m worse than I ever was with just plain old run of the mill MS which has made even staying home not that safe. All I had to do to get TGS reaching for his prescription pad was to mention that I’ve fallen twice in the last two weeks in my goddamn living room. Um. Yeh. That’s not cool, Lemtrada.

I totally get that it’s no small thing to decide to take mega doses of steroids on top of an already nearly non-existent immune system but now that I’m officially nearly two months post-Round 1 and I’m still falling all over the place like a goddamn weeble, TGS said, and I quote:

“Hi. We have to let the immune system recover over several months before we consider something besides the Lemtrada. The steroids a long shot, but can try once.

I can put in for home PT/OT but this is approved only after an at home RN eval (will arrange). Can hold off on office visit a while longer. To ER if fever, acute changes occur. Expect things to evolve slowly.”

Well then. Hi yourself, TGS. He’s a man of few words, but they tend to be intelligent if mind searingly annoying words most of the time. I told him I’d give Vitamin P a chance. And immediately got a pit in my stomach. Here we go again.

Day one was as you would expect.

Not much happens until the sun goes down. By that time the first handful of 50 mg pills had been choked down early that morning. Those pills are the most-evil tasting innocuous white tablets you ever saw but they straight up taste like what I imagine Satan’s ass crack must taste. They’re that bad. Nothing gets that taste out of your mouth. It takes hours. Gross. I move to the Premium Protein shakes as my carrier vehicle. The shakes are milky and thick so it does the best job of even masking that taste at all but…yeh. No. It’s horrible. Nothing helps. Once the magic kicked in, I took a much-needed shower and headed out to meet my family for lunch. Did you see what I did there? I took a shower AND I went out to lunch. Vitamin P…you are as magical as you are evil.

After lunch, my nephew came by and we did some chores. Well, he did the chores and I directed, barking orders like a damn drill sergeant on lots of steroids but there were steps involved, moving from basement to second floor more than one time. In the middle of teaching Alex how to make the perfect bed with military corners on the top sheet (the lesson I learned in college from a ROTC army boyfriend…the little things you remember). I’m sure Alex was about to knock me out with my normal levels of particular going right off the charts but that kid! He’s an angel. He made me laugh at my ridiculous self and I got to have a glorious Clean Sheet Sunday after a shower day and OMG. I could have died happy. It’s been so long.

Day two has been kind of a good news/bad news day.

On the good news side, I was a productivity machine. Work? Done. Personal needs? I was a machine. I canceled one appointment and rescheduled it. I got a date set with the home PT/OT service that is going to come to my house to help me get moving while I’m not so good at moving around in the outside world. Winning! Then I got on the blower with the people at Labcorp and got my first monthly Lemtrada labs posted to their portal, finally, and it made me feel much better because the things that are supposed to be normal are firmly normal and the things we knew would be hinky are totally hinky. Nice. Then I made my plan to manage expectations for my grand re-entry for a client meeting tomorrow. I mean, I have to always be honest. I don’t know if I’m going to be there until I’m walking out the door. Thank god for amazing clients who are also friends. I want to be there tomorrow so badly!

That brings me to the bad news.

I have energy. So much energy! I got about 4 hours of sleep last night but I felt rested when I woke up. I got an early start today – out of bed before 8am. But I am not experiencing the ballerina-like prancing legs that I got from the IV Solemedrol they gave me during my Lemtrada infusions. Not even close. I’m still super shaky. I’m still having some pretty serious leg spasms. I was able to do some simple exercises today – nothing too crazy just lifting my legs while holding on to my rollator. Getting the knees off the ground was kind of miraculous. I couldn’t do that two days ago. But I’m still ultra-slow, ultra-clumsy and ultra-dangerous to myself and others (that was meant to be a joke but it’s kind of true).

TGS knows his shit. It’s only a minor improvement but as I told him, I think I really needed a tiny improvement. I needed a tiny break – then we can get back to our regularly scheduled misery and I will know that it’s completely normal and I’ll refocus on the fucking marathon-not-sprint until I lose my mind one more time when it takes too long again.

Tomorrow is Day 3.

Tomorrow is my client meeting in the office. Tomorrow colleagues are coming in from Atlanta that I really, really want to see. They’re more like friends and I miss them. Tomorrow is also calling for falling temperatures (pun not intended), freezing rain and snow later in the evening. I have to be honest with myself. If my body doesn’t cooperate, if it doesn’t feel right when I go to walk out the door, I will have to turn around and walk right back in the door and send my most heart-felt apologies. But I will make that call tomorrow. I will not worry about making that call tonight. I am going to lay in bed and read. Even if I don’t sleep I can still rest my body – that has to be a good thing, right?

I got a few more important things accomplished today that feel worth mentioning.

I scheduled myself a Thursday night home massage. This whole thing of having Michael, my massage therapist, come to my house to make sure I never miss a massage again was the second-best thing to happen to me last year. Life. Changing. Plain and simple. The massage helps my body so much. I was so ridiculously tight last Thursday Michael had to help me flip over on the table (in which I did my best human burrito impression and thanked god that this man is a dear friend who would do pretty much anything for me). I mean, it would have sucked for him to have to figure out how to get my naked ass off the floor if I landed there. Neither of us may have recovered from that and a good massage therapist that makes house calls is really hard to find.      

After that, I called the local borough authority to see if I could get the parking spot on the street in front of my house designated handicapped so I don’t have to try to rollate myself across my lawn in the inevitable snow that will eventually hit Pittsburgh. Rollator operation over grass covered in snow is nothing less than deadly. Weather has suddenly become such a factor in my life! Well. It’s always been a factor in my life, anyone who knows me even a little bit will tell you that, but more now than ever. The borough people said no problem! This is a huge convenience for me. My neighbors may hate me for it but whatevs. I need clear sidewalk to get me safely to my car. I’d much rather park in my damn driveway but that’s not practical in the winter.

And finally, I scheduled an at home hair cut so that I don’t have to drag my ass into the salon right about when the benefits of these steroids are going to be a mere memory.

I’m already mentally preparing for it; the morning I wake up and I’m paralyzed again. But I’ll be a lot more mentally prepared for it with a fresh fade and a super-high pompadour. Also, I’ve mentioned this before but my hair girl is not only the most talented stylist ever but she has a heart of pure gold and she’s also my friend. She knows that a little trim will make a huge difference to me so she’s making it happen. I’m very lucky.

I always dread Day 3. I know nothing gold can stay. I learned that a long time ago from Ponyboy Curtis and S.E. Hinton. And Robert Frost if we’re going to get all technical. I’ve said it here before.

The thing is? A little gold goes a long way these days. I will take what I can get. Some day maybe I’ll learn to like silver…Or brass…Or even stainless steel.