I was probably due.

For those unfamiliar, ENC refers to Evil Nurse Carol, she being the RN who is the right hand woman of my MS specialist we all know and love, The Great Scott. Ok now that we’re on the same page, let me tell you about my latest beef with ENC.

I get labs monthly as part of the Lemtrada One-to-One program. They routinely check for urinary tract infections amongst many other health indicators to determine if something could be going amiss while my immune system is coming back from the dead. Great idea. Really super. The lab tech comes to my house once a month. I hand him a little cup of urine. He takes 5 or 6 vials of blood for all the testing and boom. It’s over.

A couple of times in the last 4 months when I’ve gotten lab results back that had red flags all over them, I’ve sent frantic emails to TGS/intercepted by ENC asking them to explain what the red flags mean.

More than once ENC has tersely pointed out that if there was something for me to worry about I should rest assured that they would reach out to me. Some of the red flags are completely expected. Nothing to worry about. She might as well just said: Stop bugging us, annoying chronically ill person. You’re chronically ill!” That’s why you feel like shit on a shingle every other day with freak symptoms coming back over and over again (sometimes with a vengeance like the most recent bout with vertigo).

Except for this month when I ignored the red flags I saw in my urine test results that were posted to my Labcorp patient portal on Monday April 15. This means TGS and ENC have had the results since the Friday prior.

Today (over a week later) I get an email from ENC that she called in a script for an antibiotic for me because my latest labs indicate a UTI. Dr. Scott also would like me to see a urologist.

Huh. Ok. That makes sense. Maybe that’s why I’ve been barely able to exist in my own home this last couple of weeks. Maybe that’s why the vertigo from hell came back for seemingly no reason. Excellent to know! I will get that script filled immediately and get back on the road to Wellville.

Except for wait just a goddamn minute. You’ve had those test results covered in red flags for over a week, ENC, a week in which I’ve been barely able to function. A week full of pain and fear (am I having a relapse??? Why is this happening?!). A week where I went back to needing help to do the most basic of personal care chores required of every human – even humans who barely leave their homes. They waited a full week to inform me and to get me the drugs that will help me.

THEY WAITED A WEEK.

When I asked ENC about this she sent me an equally terse reply to my email that said (I’m paraphrasing here): Um, yeah. Well, Maribeth, we move as fast as we can and I can’t prescribe anything without Dr. Scott’s orders so better go get your new drugs filled stat before you start feeling any worse for the thing we should have been treating for an entire week and a half. Run like a bunny, Maribeth! Time’s a wasting!

I did say I was paraphrasing.

Here’s the thing. I know I’m a pain in the ass. My customer service expectations are quite high probably because I’ve worked in a career based on client relationships for over 30 years. I know some clients are easier to be nice to than others. I’m pretty damn demanding when it comes to my expectation of care and attention to detail. I fully own all of this. I am a pain in the ass. End of story.

However, I also just received a very serious round of treatment that comes with some very serious potential side effects that are designed to be monitored by theses monthly labs. I lost a week of my life where I spent precious energy trying to talk myself through the inexplicable resurgence of symptoms. Zen-like skills aside, I’d rather save my Zen for when I really don’t have a good reason for feeling like ass. Those days are frequent. I have MS. I know this.

But when there IS a good reason for why I feel like shit on a shingle, I’d like to have the sense that my care team is going to get back to me before an entire week has gone by. I’ve been tested for UTIs so many times in attempt to explain symptom flares and I’ve never actually tested positive. Maybe that’s why she didn’t get to me more quickly? Maybe she thought it was a fluke?

Any other patient might be seriously considering changing doctors by this point in the game. Obvious choice! If your care team sucks, get another care team!

Except for in Pittsburgh. In Pittsburgh I am permitted to see only THIS MS doctor in this health system in-network with my BCBS insurance. TGS is indeed known to be the number 1 guy in our region for MS treatment. His care team, and him by extension, suck when it comes to being good partners for managing a complex disease. Add a complex treatment (Lemtrada) into the mix and it really requires a very active partnership between patient and care team which TGS and ENC clearly suck at.

I’d be more than willing to see the MS specialist at UPMC, the other big hospital system in my town. I’d give up the MS Wizard in a heart beat if it meant a better standard of care! It’s that important to living even remotely well when living with a disease like MS. Except doing that, going to UPMC for my MS care would mean that every charge I receive would be at out-of-network coverage. I’d go bankrupt.

MS, for those not in the know, is not cheap. The cost of treatment alone is astronomical. Add in the complexity and sheer number of doctors, specialists, tests, labs and scans…yeh. Out of network is not a doable thing for me seeing as I am not Beyoncé level wealthy. I’m not even former-member-of-Destiny’s Child wealthy. It’s just not possible.

So yeh. I have my very first ever MS-related UTI. I’m finally being medicated for it. I hope I start feeling a bit less like day-old dung any time now but I know this will take a while.

It could have taken a little less time had I been treated a week ago when we all got my monthly lab results.

This might not seem like such a big deal to the healthy among us. What’s so bad about a week of barely being able to function? It’s a big fucking deal. You’re gonna have to trust me on this.

I’ve considered traveling for my care to get out of the mess I’m in. I have that power. I’m fortunate beyond words that I have insurance that would enable me to even have this option.

I’ve considered going to OhioHealth and trying to see Dr. Aaron Boster himself. But that’s a three and a half hour drive. Not terribly practical. I’ve also explored The Cleveland Clinic. That’s less than two hours away and more manageable. But I have a disease that requires frequent visits and regular communication. Traveling for my care is not even close to ideal.

I’m kind of at my wit’s end to be quite frank.

I don’t care how big of a deal you are in the MS community, if your staff sucks and your standard of care is to wait a week to help a patient start treatment your great big brain means absolutely nothing to me. I’m in this situation because of an untenable dispute between two giant health care providers – UPMC and Highmark Blue Cross Blue Shield. The most ironic part of this whole shit sandwich situation is that I don’t even have Highmark insurance. I have BCBS of Illinois – the only option the giant company that I work for gives its employees. This is great everywhere else in the world other than Pittsburgh. Our company insurance plans are extensive and relatively good deals for employees. But they don’t include UPMC Health Plan or any of the other non-BCBS insurance companies still acceptable in-network by UPMC. My own giant company of over 80,000 employees can’t justify changing their plan offerings for 33 people in Pittsburgh.

It’s the very definition of a lose-lose scenario.

It’s not bad enough to navigate a complex disease that I’m trying to manage with an even more complex treatment. I ALSO have to stick with a crappy standard of care because three giant companies can’t get their shit together in order to create a solution to make sure residents of Pittsburgh have access to the care they need. Even if it’s just for the 33 who work in my office! But of course it’s not. I’m sure there are lots of people in Pittsburgh who might find themselves in this particular bind.

So the short story is “yay I really have a UTI this time and that’s probably why I am struggling to function.”

The longer story is much much more annoying.