For those just catching up…

Your heroine had a shitty post-Ocrevus infusion week and has been feeling even more weak, immobile and hot-messy since last Monday. She waited a full three days before contacting her trusty and reliable MS specialist team with a query about what the heck could be going on. That’s a full 24 hours past the 48 that they tell you to wait before contacting anyone about new or worsening symptoms (for those newbies in the back).

Two email and one phone message later, our heroine was sent for labs. Because The Great Scott, her MS specialist, was “out of town” and, according to Evil Nurse Carol, “He won’t make any further treatment decisions before he rules out a UTI.” OK then, CAROL, this little engine that could dragged her raggedy ass and quasi-functional legs to a lab facility kind of far away from her house because she wanted to ensure that results would get to his Greatness as early in the week as possible.

Or Monday morning maybe? Because that’s when the lab results started popping up on our super-frustrated heroine’s online health portal.

Of course…urinalysis is normal. CBC with differential…also mostly normal. With this rather expected and annoying news arriving first thing Monday morning, our heroine called and left another phone message for TGS and his partner in crime, Evil Nurse Carol (ENC from here because even typing her name in full here is starting to annoy your storyteller).

Tuesday morning. No response. Tuesday afternoon, send yet another email. Wednesday morning nothing.

But wait! Could it be? Could some news be coming our heroine’s way that might help her feel slightly better or even just heard, for the love of the hippocratic oath? Because she can still barely walk well enough to get to her much-needed therapy session on Tuesday afternoon. She also woke up Wednesday morning feeling like she was permanently aboard very rough seas on a very tiny boat making her feel more than a little bit desperate.

But wait! There is news from the land of His Greatness! (read from the bottom to see my email first):

I guess I was supposed to glean this information via mental telepathy? I mean, it’s almost too late for me to stumble-drag to the pharmacy.

But, OK. Two more days of prednisone, though? It’s always three days or five days but today it’s two days. I guess any other patient would take this information and move on. I am not that patient (again read from the bottom):

Um, OK, ENC. I guess that makes sense (also thanks for reminding me how old I am…but you forgot to mention how fat I am too). You must have been short on time.

Well, obviously poor ENC is short on time because otherwise she might have taken the time to provide this information in the first message, since TGS has anticipated my never-ending need for context, explanation, SCIENCE – anything to help me understand what The Great Scott is thinking. They’ve known me now for over two years. They know I’m not a “take this and I’ll see you in 16 days” kind of girl. THEY KNOW THIS.

Guys. This is insane.

Or maybe it’s just me. Maybe I’m insane. Clearly expecting some kind of context for weird shit that’s happening to me after three whole doses of the latest wonder drug is a step too far. I have a degenerative disease, after all. There is no cure. There’s no way to get better. It feels like they’re just trying to tell me, without coming out and telling me, that I should take what I get.

YOU HAVE MS, MARIBETH, SUCK IT THE HELL UP AND STOP BOTHERING US.

I’ve spent the last two days googling “Top MS centers in the United States.” Yes, The Cleveland Clinic is one of the best. Yes, Cleveland is not-so-very far from Pittsburgh, where I live but it’s definitely less than convenient. But convenience be damned. I want what they’re selling there.

On their web site, they explain what to expect at your first appointment, who you will see and for how long. They describe testing that will be done to determine where I am on my disability path. Check this out!

“Multiple Sclerosis Performance Test

The Multiple Sclerosis Performance Test (MSPT) is a new feature from Cleveland Clinic for patients to enhance their current care and better establish trends in the management of their Multiple Sclerosis. The MSPT is an iPad-based assessment of neurological function that includes health status questionnaires, a 25-foot walking speed test, 9-hole peg manual dexterity test, plus new assessments of processing/thinking speed and visual function.

The results of the tests are immediately available to your provider for use at the time of your visit, so it is important to complete the testing prior to the visit with your care provider.

Please note, your visit to the Mellen Center for Multiple Sclerosis will be structured as follows:

• 20 minutes with a Medical Assistant including vital signs, review medication list, standard nursing intake questions
• 30 minutes for MSPT
• 45 minute appointment with your care provider

Please arrive at the time noted on your appointment reminder or in MyChart, but know that your visit will consist of more than just the 45 minutes that you spend with your provider.

In MyChart reminders – the details about the appointment time will not reflect this new structure, but the arrival time is accurate. Other appointment reminders will detail the breakdown of the various appointments that now comprise your total visit at the Center. Completing health status questionnaires in advance of your visit from home via MyChart will save approximately 10 minutes on the day of your appointment.”

This is from The Cleveland Clinic’s web page for the Mellen Center for Multiple Sclerosis. Guess what? Except for being followed around the dreary halls of the Allegheny Health Network Professional Building a couple of times, I’ve never had, or even discussed, any tests like this! Not a one. Nil. Zilch. Nada. I did get a lot of drugs, though. That was pretty quickly taken care of, but no actual testing (beyond my many MRIs and my initial spinal tap).

So what gives?

I’m trying to gear myself up to make the call to the Mellen Center and jump in my spiffy new car to take a little road trip. Both hospitals, Allegheny Health Network and The Cleveland Clinic, are members of the CareEverywhere system wherein they can access patient records from participating hospitals. I think this means I won’t have to ask TGS or ENC to get my records to the Cleveland Clinic where I am getting a second opinion.

I’m a little embarrassed to admit that I’m afraid to let them know I am cheating on them.

The thing is, there is a crazy complicated health care market where I live. There is a world class hospital system called UPMC that I would totally go to if I could. The reason I cannot is because of my health insurance. Because of some complicated corporate battle of wills, UPMC no longer accepts any form of Blue Cross Blue Shield insurance. I won’t even begin to try and explain why, but suffice to say, the company I work for is very large. They buy insurance for some 80,000 employees. They offer many different coverage plans at extremely reasonable prices – and luckily I have the best one. The fact is, however, that all plan options are from Blue Cross Blue Shield of Illinois. Meaning, I’d have the best insurance possible if I lived anywhere in the world except Pittsburgh, PA.

This, my friends, is one of many, many ironies in my life with multiple sclerosis.

The very large international holding company I work for is unbelievably supportive of my situation. The only question they asked me when I disclosed my diagnosis was, “Just tell us what you need.” I did. They agreed. They’ve even accepted my ridiculous travel limitations (for the time being I’m sure) even though it is anything but ideal. I am the luckiest advertising executive in the world!

Kind of?

Anyway. My fear is, if my steady boyfriend finds out I’m trying to cheat on him, (and his annoying…wife? Ew. Gross), he might drop me before I can drop him. What if it’s just not practical to get the kind of care I need from a distance? What if I talk to The Cleveland Clinic and they tell me I’m in the best hands and I should count myself lucky to have the kind of expertise provided by The Great Scott right in my own backyard…

I mean, that would probably not happen. But weirder things have indeed happened since I got on this crazy train December 29, 2015, when TGS and I had our infamous first date.

Among the ironies of our lives with MS is this one: The disease can make you feel like you’re 120 years old whether you’re 18 or 78.

I know I now have more in common with my 78-year-old mother than I do with any of my peers. I have so little energy and strength that I can barely take care of myself and my animals. Hacking my health care is taking every ounce of my reserve. I know it’s just web surfing and researching…but this shit weighs on my mind. Stress? Not my friend. The king and queen of stressors? TGS and ENC.

And around and around we go.

I’m gonna take his rando two more days of steroids. I’m going to get myself to his office on May 18 (a full sixteen days away…but who’s counting?). I will play the game and see what happens. I will call the Cleveland Clinic and find out what’s what. Something tells me this might be challenging, but I’m committed to taking the step anyway.

I’m tired, y’all. Very, very tired.

I did something so crazy today! I asked a random stranger I met on Instagram to tell me how long it took before she started to feel more human again. Some of you who “know” me by now, know that I am fully aware of the newbie thing. I know it can take years before my MS will settle down. I know there are no two cases of multiple sclerosis that are the same. I also know and have asked enough of you more “mature” MS’ers how long this insanity can last. I know the answer could be three to five years or forever.

I know this. And yet I still accost perfect strangers online who are just trying to post pics of their cute kids and #bestbrunchever and stuff like that. I still do it. I guess I might stop doing that some day. Not this day, but some day?

On the bright side, it’s suddenly summer time in Pittsburgh! In fact, it’s currently 78 degrees in my house at 8:30PM so I just turned on the central air.

I was being sarcastic. You probably already knew that.

I am grateful. I am blessed. It could be so much worse! I will start remembering that more often. I will sure try.