Today was awesome. The Great Scott solved all of my problems. We have a great treatment plan devised that is sure to bring me to new levels of health and wellness. I went in hopeless and I re-emerged energized! Full of hope. MS does NOT have me!
Ok…I’m just fucking with you. That’s not how today went at all.
Today was…a lot. I’m going to try and break it down in such a way that won’t result in The Great Scott getting hate mail. I must stress up front, that I trust this man. I know he wants what’s best for me. I’m in his category of “difficult” cases and he seems dedicated to working with me to get me to some kind of stability.
While I do not doubt his intentions for even a single second, nor do I doubt his knowledge or skill or experience, I do wish he’d work on his words a bit. His non-medical jargon words are not terribly helpful. His words are…just off. The thing is, if he did that, if he got better with his words then these posts wouldn’t be so entertaining, so in a way he’s helping me even when he’s not helping me! Right? Not exactly.
I was twenty minutes late to my appointment because of the construction going on in the parking garage at TGS’s office. I had to walk far (very far) to get to his office. By the time I got there, 20 minutes late, I could barely stand up. He was very gracious about my late arrival – wasn’t perturbed at all. He was delighted to see me – but noted Stanley right off the bat.
“So, things haven’t gotten any better, it would appear? Let’s see you walk. Come with me,” and he guided me into the hallway. I walked about 20 feet, slowly and stumbling. “Now let’s get you out into the hallway.” I looked at him like I’d kill him dead with my own two hands, or with Stanley, but what choice did I have? Off we went. He measured it out in advance, I suppose, he’s clearly done this bit with patients before. He tsk’ed and nodded while walking just slightly behind me. Then we got back to the exam room and he asked me to grab Stanley and we’d do it all again! Hooray!
Sweet baby Jesus Christ on a cracker. By this time, I am openly stumbling. But my speed does improve a tad with Stanley and TGS seems pleased. Then the words started. The talking began, again.
TGS: So the inactivity has led to some weight gain I can see it. How much weight have you gained, Maribeth?
ME: Um…I have no Idea. I haven’t weighed myself in 20 years.
TGS: Until now – get out here, I’m weighing you right now. That’s ridiculous. You are not a ridiculous person, Maribeth. (He is very wrong about this but onward)
ME: Ok, fine, but do NOT tell me what the scale says. Trust me on this. I have major body image, weight-related issues and you might think I can handle this but trust me when I tell you I probably cannot.
TGS: Ok, Maribeth we’ll do it your way but you’re getting on the scale.
This might be a good time to explain why I haven’t weighed myself in over 20 years.
I have been in therapy for a very long time. The reasons are diverse and vast, no doubt, but one of the biggest reasons is that I’ve had lifelong issues with body image and weight. To make a long, painful & a little bit ridiculous history short, suffice to say that I’d somehow gotten it into my head that I was too pretty to be overweight. While I was never “fat” per se, I was also never thin.
I remember being told by my long-term college boyfriend how I’d be “the prettiest girl on campus” if I lost 10 pounds. Then later in life my mother-in-law was openly disdainful of my less than skinny figure. She thought her son deserved better. Her son didn’t agree with her, but this didn’t really help me out so much. That woman’s disdain scarred me. Throughout my teens, young adulthood and even into my 40s I was obsessed with the idea that the worst thing I could ever be was to be fat. Another boyfriend, this one sobbed and sobbed when I finally broke up with him, he found an old picture of me from a few years prior while on a trip with a friend to Key West and he held it up in front of me and said, “See? You CAN be thin, you just don’t want to be thin bad enough.”
Suffice to say, he wasn’t my boyfriend for long after that but he was my boyfriend for longer than he should have been. It’s a testament to my poor self-esteem that I didn’t kick him out on the spot. The truth is, I thought he was right. I was ashamed of my inability to be skinny.
He also had no idea of the extremes I had gone to throughout my life to starve myself into submission. Drugs were involved. Scary habits were involved. Without spilling all of my dirty laundry here on the internets, you can rest assured that I went to every single extreme you are imagining right now in my pursuit of thinness, and probably a few extreme measures you haven’t thought of yet. I was too pretty to be fat. You can’t be pretty AND fat. If I wasn’t pretty, pleasing and attractive to men I was worthless. No matter how successful I was or funny or smart there would always be that one thing I could never seem to be and that was thin. Or thin enough?
I’ve been in therapy for 20 years folks. I know my issues inside and out and this notion that I am somehow unacceptable for not being perfectly svelte is at the root of very many of my many other issues. It’s like the Mack Daddy of my issues. The OG issue. The original vampire of issues that sucked the joy out of my life like so much young, innocent blood for most if not all of my life.
I’m 51 years old now. I’ve worked long and hard to put my fear of fat in its place. I’m never completely over it, but I’m so much better now than I’ve ever been. I’m carrying some extra pounds right now. I know this because of my clothes and how they fit, or don’t fit, as the case may be. I’ve told myself over and over again that I need to stop falling into old habits and allowing myself to feel inferior or somehow less acceptable because I’m carrying a few extra pounds.
Cheryl, my therapist, at one point in my mid-30s forbade me to even utter the word “diet.” Focus on diet isn’t good for my mental health (or my physical health). I’ve spent many years working this out. I was a little bigger than I wanted to be, sure, but I was also healthy. So, fuck society and the annoying expectations of most (white) men I’ve had the pleasure of being in relationships with. I was OK with me just the way I was. Kind of. Sometimes. I work hard at it and I mostly fail, but I keep trying because I think it’s important so I am mostly ok.
Until I’m not.
TGS: Maribeth, we have to take some novel approaches to try to figure out what’s going on with you. The first thing I’m going to ask you to do is to lose 25 to 30 pounds quickly. I know that sounds extreme, but we need to see how you do with your walking and weakness issues once you’re closer to your ideal weight.
ME: (blank stare…flashbacks to every shithead man I’ve ever dated…)
TGS: I’m going to ask you to restrict yourself to 800 calories a day. The easiest way to do this is for you to focus on some kind of liquid diet – protein, low sugar. We can introduce some fiber after week or so, but I’d like to ask you to try this approach until you are down at least 15 pounds. Then we can add in some more variety. This isn’t a long-term lifestyle change, this is a diagnostic tool.
ME: OK? I mean…this goes against everything I’ve worked on in therapy for the past, oh say, 20 years of my life. But I will humor you. I will remove food from my life for a short time period.
TGS: Next, I’m putting you on another course of high dose steroids.
ME: Seriously? I mean, you’re kidding right? Did you just tell me you want me to lose 30 pounds in short order AND you’re putting me on steroids?!?!?
TGS: We need to see if you respond to the steroids to determine the role inflammation (medical jargon, blah blah blah, possibly progressive scenario, but no panicking yet blah blah blah).
ME: You know what? Whatever. Fine. Sign me up. I’m getting on the crazy train with you, Dr. Scott. You better not fucking let me down.
It went on from there.
Apparently along with being fat, I’m also old! I mean, I knew that before today but I didn’t know how unusual it is for such a late in life diagnosis to be such a rat bastard to get under control. I wouldn’t qualify for most clinical trials based on my age alone. Most aggressive treatment options are less likely to be tested on me because, again, I’m old! Fat and old. Don’t forget the fat part.
The bottom line is, I will do the round of steroids. I will drink my damn meals – for the time being. I will have my next Ocrevus infusion on Monday. We will see if I improve (four months, says TGS) and we will meet again in August to determine next steps.
I will walk gracefully into his office, no Stanley in sight, svelte and lean and never having felt better in my life (OR looked better) before in my life! And we will laugh about that time we thought I might not get better like it was a bad dream starring some kind of pretty, if moderately chubby, middle-aged woman.
Or, I will stumble into the lair of TGS, or better yet wheel in on my awesome new motorized wheel-scooter (because I finally got tired of stumbling all over the damn place) and then The Great Scott and I will discuss giving Lemtrada to a middle-aged woman who shouldn’t be getting worse so quickly and who is likely not the best, most ideal candidate for Lemtrada in the first place.
But we will discuss it. Because we’re going to figure this thing out.
PS. I know there will be a lot of people with opinions, very strong ones, about how one should go about losing weight and I’m almost positive most of them won’t resemble going on a liquid diet for any period of time. But please understand, I know those arguments. ALL of them. I promise you. I appreciate your good intentions, I really do, but I’ll be better off if you keep that advice to yourself just now. Thanks in advance. It means the world to me.
Roxann Roberts
April 17, 2018 10:49 pmI enjoy your blogs, I thought I was the only one who had body image problems, like you do…you are so strong, you can do this
bethnigro0212@gmail.com
April 18, 2018 12:52 amI’ve come to learn that any time in my life that I’ve ever felt alone in my brand of crazy, it is nearly never the case. Someone out there feels like you do. You just have to find them. 🙂
Dave
April 18, 2018 12:03 pmAs a man, I cannot wrap my head around how some “men” can speak to ladies the way you have experienced.
I apologize on behalf of the dimwitted assholes out there. 😤
bethnigro0212@gmail.com
April 18, 2018 12:24 pmThanks Dave. I’ve always been a dim witted asshole magnet of sorts (I should put that on my resume!) but as I got older, I got better at de-programming myself and getting those messages out of my head. Mostly. The only reason TGS gets a pass is because of his amazing brain and MS guru status. Lol
The Little Cripple That Could!
April 18, 2018 9:22 pmI believe I may also be a dimwitted asshole magnet!
bethnigro0212@gmail.com
April 18, 2018 10:34 pmAhhhhh…well, if it makes you feel any better it’s been my personal experience that some of the most attractive, delightful, oozing good energy people out there are ALSO dimwitted asshole magnets so I this could be perceived from some angles as a good thing? Maybe? LOL
Tara
April 18, 2018 5:23 pmSo what Ms medication does the great Scott have you on now ? If lemtrada is the next stop after weight loss?
bethnigro0212@gmail.com
April 18, 2018 7:29 pmhi tara! i am currently on Ocrevus. I have my third dose on April 23. After that we’re waiting four months to check back in to see how I’m doing before considering the switch to Lemtrada. He also put me on a three-day course of high-dose steroids leading into my infusion on Monday. I’ve never really had a “remission” per say since diagnosis in december of 2015. It’s become more than a little bit frustrating.
bethnigro0212@gmail.com
April 19, 2018 8:33 amRight now I’m about to get my third dose of Ocrevus on Monday. We’re waiting 4 months after to check in to see how I’m doing. Then comes the Lemtrada discussion. I’m on day 3 of liquid diet and I’m almost used to it. Kind of. Yeh. It sucks. 😂🤣
The Little Cripple That Could!
April 18, 2018 9:22 pmOh.My.God. How have I missed out on your blogs!? This was hilariously enraging! I loved every word 😀
bethnigro0212@gmail.com
April 18, 2018 10:35 pmOMG how have I missed YOURS! The name, in and of itself, tickles me something awful! Going to read. Stat. And thanks for loving every word. I can be an…acquired taste?? LOL
Robyn Dunphy
April 19, 2018 12:07 amYou have acquired me! 🤣🤣
Great post. I won’t say anything else in rder to abide by your closing comments. 😉
bethnigro0212@gmail.com
April 19, 2018 7:35 pmOh, say anything. I can take it. Also I’m now on day 3 of liquid/keto diet and it’s just about killing me. LOL
Robyn Dunphy
April 19, 2018 8:14 pmNah, I was joking. I don’t really have anything I could say, I would be breaching professional ethics. Not that I disagree with your doctor’s approach, but I know a liquid diet would kill me too! 😂 Stick at it, though:, think of it in terms of health, not body image. That’s how I approach it.
bethnigro0212@gmail.com
April 19, 2018 9:23 pmI’m gonna try to do just that. That’s great advice. thank you!! 🙂
Lauren Fioresi
April 24, 2018 1:07 pmI love your writing. Mirrors how I feel almost exactly. I am pissed off every day!! But in spite of everything I keep moving. I like to say at least I am upright. Keep moving as best you can. Try to find the humor in everything. And please, please don’t stop writing. I check daily to see if you have posted. I have to ask… How did your infusion go? How did your steroids go?
bethnigro0212@gmail.com
April 24, 2018 8:01 pmHey Lauren! Thank you so much for your kind words. I’m still recovering from yesterday’s infusion and haven’t had the energy to sit and put anything into words before I feel like I need to sleep again…I’m sure all of us relate to that feeling. I had an allergic reaction to my infusion (again) which meant it became a 8-9 hour day for me. I think I should start coming back to life tomorrow? I’m hoping so because I have lots to write about. Thanks for being such a loyal reader! It motivates me to keep writing to know that I’m actually connecting with people out there somehow. I promise there will be a new post soon. 🙂
Lauren Fioresi
April 19, 2018 2:14 pmI just love your writing. I have MS 20 yes. I am 41. I fucking hate it!!! And my husband it too. But, oh well…I’m just stuck with legs that won’t effing work. I got myself a sparkly cane. She is very dazzling! If I have one more person look at me funny when i am walking i am going to scream. Anyways….i just had to say i actively look to see if you post every day. I really enjoy what you post and wish you luck. I look forward to the next…
Lauren