I feel like I’m over-posting. I really do and I know how over-posting is a blogger’s worst offense.  But I had to get this down before I forget all of the marvelous details. Today I had one of the most satisfying visits with The Wizard himself, my MS specialist, or as I like to call him The Great Scott (TGS for the newbies).

First things first…the term “scorch the earth” was used in a phone call I had earlier today and it reminded me how apt that phrase can be in certain situations, like say this one, this very day. You could say I scorched the earth around Evil Nurse Carol (ENC again, for newbies) and I don’t feel even a little bit bad about it.

TGS read to me from the patient log where Carol noted calling me not once, but twice leaving extremely detailed messages both times with direction around my particular questions (the first one, when I couldn’t walk after my Ocrevus infusion, the second when I sent the pic of my rash asking about shingles):

TGS: It says here that you emailed and called…blah blah blah and Carol called you back and left a detailed message about next steps.

ME: Um. Nope. Does Carol know how cell phones work Dr. Scott? Because mine is practically attached to my hand, first of all and second, when I miss a call, my phone tells me I missed a call. If I’d gotten even ONE voice mail, let alone two, I would have record of that IN MY PHONE. Because…TECHNOLOGY. She didn’t call and she didn’t leave any voice mails. Period. Next?”

TGS: We don’t like hearing that…

ME: Imagine how much I don’t like saying it. Imagine you’re at home and you can’t get yourself around and you call what’s supposed to be your partner in your medical care and you get completely ignored. I imagine you’d find that unacceptable, wouldn’t you?

TGS: I imagine I would. Your point is clear.

ME: OK then. I’m gonna need to know who to contact so that ENC doesn’t 1) ignore me completely 2) lie about doing it in her notes to you and 3) someone that will get you the information I need in a timely manner so I’m not out here in nowhere land wondering what the hell. (I got Katie’s direct dial…Katie* is now my girl. She better not let me down).

TGS was completely unaware that ENC had intercepted email I sent to him. If he was lying, he deserves an Academy Award (or the equivalent for MS specialists who are also excellent actors).

On to the other news from Allegheny Neurological Associates!

TGS: In the future, your appointments are going to take much longer, Maribeth. We’re establishing a new protocol here to more accurately gauge physical and mental disability that includes a series of tests (some using an iPad, other physical tests) to document your progress. This protocol is in place at several other MS centers and we’ve recently gotten funding approved to implement that protocol here.

ME: Oh, right. Like the protocol I researched at The Cleveland Clinic. Is it like that one?

TGS: It’s one and the same. You always impress me with your knowledge, Maribeth. It’s a good thing to stay on top of what’s happening in treatment and care.

ME: It certainly is especially when you can’t even get someone to call you back when you think you might have shingles…wouldn’t you agree?

TGS: (chuckles) Why yes. Yes, I would agree. Your point, once again, is clear.

ME: I’m rarely accused of being subtle, TGS. Very rarely indeed.

His medical opinion on the why of my shingles is mixed.

It could be an infusion reaction (this has been noted with folks on Ocrevus and not entirely novel). Or, it could be from the last dose of prednisone further weakening my already weakened immune system and pushing me over the edge. Kind of like too many T’s and B cells killed all at once creating the perfect environment for shingles and other crap. Guess what? (I’m not going to make you guess, again, I’m no tease).

We have to wait and see.

The bottom line is if I tank again between now and September 4 when I see TGS again, we will reconsider my treatment. At that point in time I will more than likely be transferred to Lemtrada. This motivates me and scares the shit out of me all at the same time. But I am not ready to take this disease as it comes. Not just yet. So if it happens, I will be ready to make that transition.

We talked a lot about new therapies and his vision for what might be next. We talked about HSCT and he felt strongly that until there are human trials that don’t involve deaths, it’s going to be much more than five years out before this becomes a viable FDA-approved therapy.

He said there are exciting things in progress, however, possibly 4 years or less out that are more clearly focused on re-myelination. He said it was more likely that I could benefit from those new discoveries than an FDA approved protocol for HSCT. I won’t tell you the rest of what he said about private clinics, traveling to Russia etc because I know and love people who are choosing to go in these directions and I respect their decisions.

He tested my walking and said I was about the same as I was the last time I was in. He wants to see if after this shingles thing is under control if I start to benefit or show positive progress from Ocrevus, since this was my third full dose. He gave me an order for some more elaborate labs to test different antibodies etc. in preparation for the decision between Ocrevus and Lemtrada (and perhaps shed some light on the whole getting shingles thing). He wants me to wait another 5 days and then make my first PT appointment.

To be honest? Today’s appointment reminded me why I felt so lucky to get to be one of the last new patients in TGS’s posse.

He paid attention. He listened and we talked like two smart people trying to solve a particularly difficult puzzle. I not only ripped into him about Evil Nurse Carol, I also gave a dissertation to Carol’s boss, thanks to my new friend Katie. I’m not saying this will change anything. I can only imagine what kind of pics ENC must have in her possession that allow her to keep her job at Allegheny Neurological Associates but I am nearly certain I don’t want to know.

The problem is that my experience with ENC is not atypical. Hang around the infusion room or make friends with a few fellow patients and you start to understand that my experience is pretty standard for ENC and she gets away with it for some reason I cannot fathom.

What I mean by that is that even in the best case scenarios (a ranked MS specialty care center right here in my home town) you still have to actively advocate for your own care. I am probably more suited to do this role based on what I do for a living and my particular unwillingness to accept shitty service. If I treated any of my clients similarly, I wouldn’t be in business for very long.

Most patients, on the other hand, do not have the wherewithal to advocate for themselves. Nurses are overworked. There aren’t enough of them. They accept some level of inevitability related to disappointing some patients at least some of the time. Remember my in-patient experience at AGH? Yeh. Me too. Scary as hell.

Katie told me a story that almost brought me to tears. She told me of a patient, this one in her late 80’s who had emailed and called ENC with questions about her care. Katie actually overheard ENC tell this woman, “You’re not allowed to call me like that any more.” Needless to say, this is not OK. Katie reported it to the supervisor, again. I guess now that we all have work arounds for avoiding her, ENC will probably get what she really wants! That would be NOT having to deal with the likes of us, the chronically diseased. I wish she would get that pleasure as a result of losing her damn job, but then again, the pictures. There must be pictures!

It was a really good appointment but that doesn’t mean I won’t be doing the virtual consult thing with The Cleveland Clinic. I’m still going to do it. I feel like it’s required before I make the leap to Lemtrada. It feels like the responsible thing to do, so I will do it. I’d be a liar if I didn’t admit that I’d rather stay in town for my care, though. I want TGS and his team to work out their shit. It’s important. And if I have to call and report ENC’s sorry ass every single week, I will do it. Something has to change even if I don’t have to deal with her anymore. Other people do and it’s not OK.

There is one more thing I hate about going to see TGS.

The damn parking garage is perennially under construction. This time, the six or so handicapped spots in front of the entrance to the Professional Building where TGS is located were completely blocked off. I had to park on the 7th floor (the damn roof) and walk a bit further as a result. I got there all well and good. The ramp to the Professional Building is downward from the roof so, easy peasy. I neglected to think about how I’d make it back to my car after the longer than normal visit with the wizard.

Walking back up the ramp, my legs started to drag. I was so weak, it felt like climbing a giant mountain with only one pole. I thought how much I wished I had Laurel & Hardy (my trekking poles) with me instead of Stanley (my cane). It was a harrowing incline. I made it to my car and heaved a sigh of relief and gave myself a stern talking to…Next time get a damn ride. Stop trying to be so self-sufficient that you almost kill yourself walking to your car in the damn parking garage of the damn hospital.

I kind of relate a little too much to the Scarecrow up there. I go to the wizard every 3 months or so wishing for a brain (and ideally a c-spine) without a million lesions all over them. I leave with a task to perform that might bring me closer to getting my gift. I fear the outcome will probably be the same for me some day as it was for the Scarecrow in the movie.

I will never get a shiny new brain and c-spine without broken parts but I will realize that advocating for myself, is the only answer. Not sitting down and shutting up, and always pushing for whatever might be coming next medically-speaking that might have a chance at giving me a better quality of life than I’m currently experiencing will keep me going down the yellow brick road whether that road leads to TGS or off to Cleveland.

I will realize that I had the power in me all along.

*Katie is not her real name. I realized that while I am completely comfortable outing Evil Nurse Carol, her evil deeds however she justifies them deserve to be shouted from the roof tops. I didn’t want someone to run across my blog who might know both Katie and Carol and do something unkind to this kind person who is trying to help people. So yeh. Protecting the innocent and all that.