The labs have been drawn. So many vials of blood! The urine has been tested. The body has been checked for suspicious moles (all clear) and the pap smear has been executed. The Lemtrada One-to-One nurse has called me (too many times – she’s way too chatty). And still the waiting continues.

A letter came in the mail on Friday from my insurance company that said my doctor’s office had inadvertently submitted the wrong pre-determination form and a new form needed to be submitted. Oh. And one more test is required by my insurance company (not by my doctor or the drug company this time). I need to have an HIV test. OK then, sure! Sign me up.

In the meantime, some days my legs barely operate at all. I’m not sure it qualifies as foot drop so much as it should be called foot drag. Neither of my legs want to lift themselves off the floor with any real regularity. Sometimes they refuse to lift high enough to get up my various flights of stairs so I lift them with my arms while also trying to hold on to the railings because one thing that would definitely make this worse would be falling backwards down stairs. I am very, very careful. Very careful. Parts of my body are completely numb, new parts every day.

Out of the last two weeks, I’ve have had quasi-functional legs a total of three days. The good new is one of those days got me to a big work function going on in my office (whew) which allowed me to see people I haven’t seen in a while. It was actually pretty awesome. The other day that my legs decided to work just happened this past Friday which happened to be my regular hair appointment.

Brace yourselves, people, but this crazy platinum blonde hair? It’s totally not natural! I know. It’s hard to believe but my roots come in mostly almost black (aside from the generous sprinkling of gray around my face). They require regular maintenance. It’s my favorite day of the month and this month it just so happened that I had semi-functional legs that got me to the salon! Well, Clara my sleek Danish rollator, had a lot to do with it but I’ve come to accept that reality. Clara is my girl. She is so light I can pick her up with one hand. She comes through in the clutch. She is solely responsible for my perfect silvery locks. Well, her and Dana my hair magician. She comes through every time, too. It is good to have things one can rely on even as one’s life is unraveling.

I’m technically un-medicated right now. I was scheduled for my next round of Ocrevus. It would have taken place on Monday October 8 but we canceled that in preparation for my new adventure with Lemtrada which is what all of this crazy hoop jumping is about. So my disease is uninhibited right now. Having its time in the sun, as it were. The electric currents that run down my neck to my back and then to my legs when I turn my head just so. The heavy, dead legs. The fatigue is off the freaking charts. It’s all coming out to play because the poison has run out and nothing is reining it in. I’m chock full of Ts and Bs, those would be immune cells for those not in the know and they are likely running wildly through my body, partying it up while they can.

Until I bring out the big guns, that is. My MS (and my body) has no idea what’s about to hit it. It’s about to get real up in here, people. Lemtrada, I am told, is no joke.

I knew this when I signed the forms. I knew it was likely that I would get worse before I got better. I knew it was going to be hard and that I might feel really, really bad for a few weeks. Maybe even longer. But even this is more appealing to me than the idea of living like this, the way things are right now, for much longer. Living in this place where I’m waiting for the next round of madness is indeed driving me mad. This new drug might be a hail Mary. It might be a shot in the darkest of the darks. But I have to try because I’m starting to lose it, people. I’m starting to really lose it.

I miss my friends. I miss my life. I miss my office. I miss getting dressed (in actual clothes) and wearing makeup and putting on cute shoes. I miss not being afraid to walk out the door. I miss taking the basic operation of my limbs for granted. I miss being outside – and I don’t even like being outside all that much, but I miss it now. I miss me. Myself. That person I’d grown to enjoy. I miss having even a quiet little social life. I miss wine. And bars. And small talk. I miss having something to talk about that isn’t this fucking disease. I miss being frivolous and silly and laughing at something that isn’t how pathetic my life is now.

You have to laugh, you see, otherwise you’d do nothing but cry and we all know how I feel about that.

I miss blissfully sleeping in without feeling like I’m destroying my body. I miss making plans (even when I’d cancel them at the last minute to stay home). I really miss loving being at home. I really used to love being home! My home. I made it for myself and put so much of myself into making it the perfect place for me to be that I would honestly tell anyone that asked that it was my favorite place to be. Until I started not leaving it very often, that is, because lately it feels like my own personal prison. The prison I made for myself with really nice furniture. At least it’s swanky and comfy but it has all of those damn steps, too. I guess you really can’t have it all when it comes right down to it.

What I miss the most, maybe, is my love of being alone. It’s different when you don’t choose it. It’s decidedly different no matter how hard you try to talk yourself into it being the same. Being alone now feels oppressive. Before it felt like a luxury.

I’ll probably get my HIV test on Monday or Tuesday. Something to look forward to! Then I wait for my doctor’s office to resubmit the proper forms and hope the insurance company gives me it’s official blessing because here’s the good (?) news: We’ve set a date!

Lemtrada and I will be tying the knot the week of November 5. It seems like as good a time as any. I mean, I’ve given up trying to find a good time to get poison infused into my body for 5 days in a row. I’ve been told to arrange for help. I’ve been told to prepare for the worst and expect the best – which would be what? I’m not sure. I’m not even sure what the best expectations would be for me right now.

I’m going to take two weeks of vacation to get me through the worst of it. No cruises or girl’s trips or weekends away to look at fall foliage or lazy days on the beach or Parisian cafes for me but I’m fortunate to have the vacation time to take and I’m not even kidding about that. I am fortunate and I know it. I promise you I do know it.

I’ve been told over and over again that three years (just under if we’re being technical) is in no way long enough to process this crazy downward spiral I’ve been on. I’ve been told this is to be expected. When life throws you a curve ball like this one you really have no control over the hows and whens, the highs and the lows, then the lowers. You just stumble blindly along waiting for the next thing to happen. And in the between times, you try not to think too much about what your life has become and be grateful for what you can still do.

I can still walk (occasionally). I can still live independently (many cannot). I can see pretty well, and when I can’t I have a plethora of funky frames to make wearing glasses a little less annoying. Most importantly, on some days, I can still drive. Thank the freaking universe for that because without the ability to hobble to my vehicle and escape this house every now and then – even if it’s only occasionally – I would surely lose what’s left of my mind. I know to appreciate that freedom for as long as I can because a lot of us can’t drive anymore. I can still use my brain and I do it on the daily to continue to work. I am extremely grateful for that. Most of the time anyway.

I am grateful for all that I can do even while I am openly grieving all that I cannot.

I’m looking forward to November 5 and I am dreading it at the very same time. I have to pack my lunches, bring my pillow (those infusion room plastic pillow cases are an abomination pure and simple), download some audio books and pack a cooler with water. I need to arrange my rides and kitty care (one can’t be scooping litter when one’s immune system is being destroyed). I have to buy hand sanitizer for the first time in my life. I used to scoff at the germphobes, people. I laughed in the face of germs! I’m told that would be a bad idea while on Lemtrada. Color me informed.

I’m tired of waiting! And I’m wishing I could wait a little longer.

We have few days of Indian summer to get through here in Pittsburgh over the next days. After that I hope fall sticks around for a bit longer. I enjoyed it for the few days when I thought summer was over. I still enjoy it when the weather is cool but not quite cold. I still love that. Maybe I love it more now because when the windows can be open in my house I feel less cut off from the world. I can hear the outside even if I’m not up for being there.

Just a few more tests and a few more weeks and the adventure begins anew. I’m up for it. I’m up for anything right now. Let’s do this.

Until then, I was getting so sick of looking at the same old things in my house that I decided to buy myself an awesome new chair. We all seem to like it.