When I decided to go for this new approach to my treatment, I made some promises to myself. Maybe they were more like challenges that I presented to myself than promises but I decided to treat this experience the way I’ve always treated my work: No matter how bad, intense or scary things might get, I would believe in my ability to figure it out and doggedly refuse to even consider any alternative beyond that which I desired – for me, for my team, for my clients – for all of us.
My therapist Cheryl always reminds me when I panic about anything in life how good I am at hard things.
When I wale in her little room with the busted up leather chair, the acrylic paintings of flowers on the wall behind her head and the overwhelming heat coming from the space heater that’s there for every other patient who always seem to be cold, she calmly reminds me that even though I never see it this way, I am very good at difficult things. I always respond in the same way. “Well that’s different. That’s just work. I don’t know why or how or when I realized it, but this work I do is as easy for me as breathing. I’m confident, I’m smart, I know what to do and I do it. My real life hardly ever reacts to my will quite the way my work life does. Also, my work is a stupid thing to be good at. I’m good at making other people money. I need to be good at really hard things. And I’m just not.”
My long-time friend Jennifer and I have a running joke about the common phrase that is thrown around in advertising agencies when someone is able to surmount seemingly ridiculous situations with ease. When you can do this, people often will refer to you as a “trooper” as in, “Jesus Beth, you really pulled that shit off, you are such a trooper!”
Jen and I always secretly laughed at the idea that either of us were troopers. We both secretly knew that neither of us was really a trooper. We were merely good at impersonating troopers. I hated schlepping around the country, luggage and computers in tow being tossed about willy nilly by the whims of the business world: late flights, late nights acting delightful, long meetings not losing your shit in front of clients who might just drive you nuts, and the dreaded canceled flight leaving you stuck in a place you didn’t want to be for longer than you wanted to be there. I would text Jen in these times with our personal code, “JENNIE…stuck in NYC and I am SO NOT A TROOPER.” And we’d laugh.
I think of this phrase a million times a day since being diagnosed with MS, a disease that makes even the everyday basic actions of life hard and I say to myself, “OMG Bethie, you need to be a trooper! Figure it out! Suck it up for the love of god! Get your shit together!”
The thing is, I realized today that I actually am a trooper! Imagine my delight and surprise when it finally hit me. Being a trooper doesn’t mean you have to enjoy what’s happening in your life, it just means you trudge through it and get to the other side eventually. Nobody really likes being a trooper, it’s just what life requires and you suck it up and do it whether you like it or not. I’m going to say it loud and proud right now!
I am indeed a trooper. And I will get through this.
After the hell that was the longest infusion week ever, I’ve had surprisingly little to deal with after Round 1 of Lemtrada. I was prepared to feel like I am dying. I was prepared for pain and suffering. I was prepared for horror and calamity. Now, I’m not stupid enough to think that any of those things aren’t still out there waiting for me to think I made it through this scot-free, but I am here on Day 6 post-infusion feeling pretty OK. Pretty OK but for one big thing. My legs are pretty much like dead tree stumps these last few days.
You know that my legs are often the source of my MS angst. The fuckers just don’t often want to cooperate when I most need them to, which is often because usable, functioning legs are things most people tend to take for granted. When you have a faulty set of legs, things get complicated pretty fast. Since a couple of days ago, my legs are behaving like Satan’s very own limbs – they refuse to actually lift off the ground. They buckle when I’m gingerly easing myself up and down steps. They make walking the very short distances in my house between things to hold on to rather dicey.
I’ve stayed in bed a few days since this has been going on. It’s kind of the best option really when you live in a three-story house and have shit legs. I’ve been lucky to have my family at my beck and call to come bring me full water bottles, sausage McMuffins and other critical staples of life. I’m also lucky in that I have an amazing bed and time off from that job I used to be so good at to actually allow myself the luxury of time to heal. So what if I can’t move my legs? I literally have no place to be. I am here. I am safe. I am loved and taken care of. I am supported virtually by a network of other MS folks and a network of friends who understand how much I miss life so they send me loads of messages, updates and even video messages! Those are my favorite.
But I’d be a liar if I said this didn’t freak me out just a little bit. I emailed The Great Scott this morning after I spoke with the worlds’ best infusion nurse to let him know what was happening. I explained how I felt basically pretty great with the minor exception of these stupid legs. I wanted him to know how good I felt! That I wasn’t panicking – that I remain optimistic that this aggressive approach to my MS was still the right thing to do. This too will pass, right TGS?
Well, he didn’t sound as optimistic as I felt but I’m gonna give him a pass. When he responds to me himself without sicking Evil Nurse Carol on me it always gives me pause. When he calls me, it straight up freaks me out even while his voice is soothing me. He didn’t call me today. That’s a good sign. He just wants me to get to the ER if things get worse. I wish he hadn’t of said that because it definitely harshed my Zen-like approach to this post-Lemtrada recovery situation but I’m still sticking to my trooper-like optimism. His reply didn’t beg for a response but I had to send one. I had to let him know that I was not accepting anything but open optimism when it comes to what happens next:
I’m cracking my own self up. I can see TGS over there in his office thinking to himself in his sardonic, big-brained inner voice, “Methinks Maribeth doth protest too much perhaps.” Maybe he’s right. But I’m not letting this shitty leg experience harsh my vibe. My approach to this is simple:
1. When you go to move your legs and nothing happens, don’t panic.
2. Use a little shopping bag to carry supplies from floor-to-floor to allow for maximum holding on ability with both hands.
3. Take the drugs I’ve been prescribed, as prescribed. Take the other drugs that help relax my muscles that I get at the dispensary as needed.
4. Pick up a good book. Read it. (I don’t have a television in my bedroom and I’m kind of resistant to adding one even in my current predicament.)
5. Drink lots of water. Pee. Sleep. Repeat.
I stayed most of this day in my bed but I eventually made it downstairs. I’m reading a book that I kind of love but that is also irritating to me because as usual, someone went and wrote a book about the way I live my life before I could actually write it myself (this haunts me…I am haunted by the books I didn’t take the time to write). I shall feed the kitties in a bit and loll about on my big green chair until said time that I realize I can’t climb the stairs one more time today – and then I shall retire to my boudoir, as one does, and loll about some more up there.
I’m not sure what happened to my brain during that hell week of infusions but whatever it was, I think I like it. Maybe it’s the realization that this is kind of my last hope – for now anyway. There is not currently a cool new treatment for me to have my unrealistic hopes set upon thus keeping my life firmly rooted in some kind of ungodly medical limbo. Until there is, I feel some kind of strange calm. I’ve officially done everything I could possibly do, medically speaking, and there is some crazy freedom in that fact.
My legs don’t work so well right now…but I’m choosing to believe that it will work out somehow. I’m going to avoid the ER at all costs, sorry TGS. That place is no place for sick people. I’m going to follow doctor’s orders and I’m going to keep envisioning my central nervous system as a golden network of wires inside of my body that is currently not being attacked. I keep envisioning my golden central nervous system as glowing with the reality that the rogue cells that have been attacking it relentlessly have been killed dead. At least for the time being.
I envision the inside of my body empty of bad things. I envision it resting and appreciating the respite. I can almost feel the lack of badness inside of me – even though I can’t move my legs so well right now – that void has a distinct feeling and the feeling is good.
That’s how I’m feeling for today anyway.
Anne B
November 15, 2018 6:58 pmLove your frank and witty realizations. I am new to the MS thing (52, diagnosed in April), and always appreciate your views. And, I appreciate that you know where the apostrophe goes in y’all. You have no idea what the yankees down here in the south do to that word. 😎
bethnigro0212@gmail.com
November 15, 2018 7:35 pmHey Anne! I remember what it was like to be newly diagnosed. It wasn’t fun. If there’s anything I can do to help, please reach out. I still feel relatively new to this whole thing myself. But those early days were awful. Sending you all the good vibes. ❤️
Positively Alyssa
November 26, 2018 10:55 amYou made me laugh with the apostrophe issue with these darn yankee southerns! I actually was born in the north, but I have been in the south more than half my life. However, ever 20 year ago I knew where to put the apostrophe in y’all!!
Positively Alyssa
November 26, 2018 10:56 amOh Anne I forgot to say, being diagnosed can be a scary thing and I remember how I felt 18 years ago. It is good that you are reading blog posts from others with MS. I must say that Beth is an amazing person and her story is inspiring with each post!
Doreen Espinosa
November 15, 2018 8:38 pmThis is the first time reading your prose. A friend posted it and I took an interest. Little did I know that it was about MS!! I was diagnosed in 2004, right after I went into remission with a blood disorder (ITP). I felt like I went from the proverbial frying pan into the fire. I had an aggressive physician who started treatment that week, the usual steroids, injectibles etc. After 4 years with progression disabling me, I fell into a deep depression. I ended up in Bry-Lin in Buffalo after a suicide attempt that failed horribly. I really was just crying out for help. A wonderful psychiatrist took pity on me and gave me 12 ECT treatments and, after months in a wheel chair, I walked out on my own. I had my ups and downs until my insurance company refused any further IVIg treatments. It was after a long fight with my Dr. that I finally decided to part ways with him. My new group decided to take a hands off approach after I failed on Ocrevus. Best thing ever!! I feel so much better without all those drugs. I have good days and bad days, but I make it through. I know it is not the approach for many of us, but, there is a light at the end of your tunnel. My light dims at times, but I keep heading into the light!! You are that trooper and, as us older MSers would say, I have MS, it does not have me. Keep up the good fight!!
bethnigro0212@gmail.com
November 16, 2018 4:21 amWow Doreen. Thank you from the bottom of my heart for sharing your story with me. This disease really kicks you when you’re down sometimes. Or all of the time. Knowing your story inspires me. And I’m so glad that attempt failed. You are an inspiration. ❤️
Lauren Fioresi
November 20, 2018 6:16 pmImage result for martin luther king quote about moving forward
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“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” “Only in the darkness can you see the stars.” -Martin Luther King Jr.
Never forget this Beth. This had become my mantra!!! Say it over and over to yourself…I do.
Lauren Fioresi
November 20, 2018 6:32 pmI really need to edit better! I copied the last quote by accident…but it is still true anyway. Wishing you strength my friend.
bethnigro0212@gmail.com
November 20, 2018 7:07 pmThank you, Lauren! I need reminders like this. Frequent reminders!! I hope you have a lovely Thanksgiving!
Merinda
November 15, 2018 9:01 pmI don’t have MS but I have Fibromyalgia… You give me hope to stay positive… Your an inspiration… Thank you…
bethnigro0212@gmail.com
November 16, 2018 4:22 amI think with fibromyalgia and MS we have more in common than you’d think. I’m so glad you found my little corner of the world. Thank you for your kind words. ❤️
StephanieG.
November 16, 2018 5:08 amI feel for you Beth, I really do. When I had my 3rd “flare up” (the day after my sons 3rd birthday), it went after my right leg and hip. If I wasn’t so damn stubborn, I would’ve (should’ve) been in a wheelchair. I could barely walk due to not being able to feel my leg. Like it wasn’t attached to me. And in turn, it wouldn’t do anything I wanted it to. After finally acknowledging to myself that I wasn’t crazy, I met with a Neurologist, and was promptly diagnosed with MS at the age of 29. I was hospitalized immediately, and found out just as quickly that I am allergic to Prednisolone. I was very fortunate that my insurance approved Acthar. I am still not quite sure what is in that stuff, but I’ll be damned if it didn’t stop the worsening of my symptoms dead in their tracks and i started to regain the feeling of my leg again within 24 hours. (It had been about 2 months since I had first lost feeling in my leg.) But the doctors were not very optimistic, and told me I would likely need assistance walking from that point on. I had actually started to come to grips with the fact that I would never chase my son around the park again. But let me tell you, I ran for the first time again just in time for my son’s 5th birthday. It took some time, and some determination, but I got there. You have got the right attitude about this Beth. Don’t ever give up hope. And never forget, that the mind is an incredible piece of equipment. You don’t hear about people who have given up, suddenly healing. Because they’ve already accepted in their minds that they are done. Keep up the positive thoughts and push yourself. Push yourself to do the things that doctors tell you you can’t or won’t ever do. Push yourself to do the things that you think you can’t. And DONT get discouraged if you don’t succeed the 1st, 2nd, or 10th time. Just keep trying. And never give up hope. And for those days when it all seems like too much, and you feel depression start setting in, remind yourself that as much as this sucks, it could be worse. And if you ever have any doubt in that, let me know.
bethnigro0212@gmail.com
November 16, 2018 7:41 amI love hearing stories like this. Well. I’d love it more if you didn’t have to suffer through such trials but that fact that you have and have come out on the other side…those stories are my favorite. Thank you for your guidance and the benefit of your experience. I am eternally grateful for souls like you who willingly share their experience. It’s what keeps me going. ❤️
Sandra Schneider
November 17, 2018 7:33 pmI’m with you about the ER. You’ve just undergone one of the most brutal MS regimens out there. Your body has fought a war and needs time to get its bearings.Opening yourself up to every infection in the hospital when you have no immune system seems downright scary. Not to mention the fact that other than more steroids, there is nothing else they have to offer, So, your no-panic philosophy seems like the best option. Hang in there, Bethy. If I were you I’d be vacillating between calm and accepting and scare to death. You just need to keep telling yourself that you are not having an MS attack and that this too will pass.
bethnigro0212@gmail.com
November 17, 2018 7:36 pmThat is definitely my plan, Sandra. I’ve been in pajamas constantly, sleeping as much as I feel like I need to…all of that. It’s starting to get a bit trying after so many days of stumbling around like a crippled drunk, but I’m committed to sticking it out. I don’t want more steroids. I definitely don’t want any visits to the ER. I’ll just stay right here and wait this out. That’s my plan anyway. 😉
Positively Alyssa
November 26, 2018 10:58 amOh goodness Beth, I am really sorry for my delayed comment. I am sorry you are going through so much right now, but I do know you have the strength to make it through this mess. You are so much stronger than I think you will give yourself credit for. Even going through hellish times, you still show your great personality with every word. Take care sweetie and please know not just myself, but everyone on this blog is here for you!
bethnigro0212@gmail.com
November 26, 2018 4:47 pmI feel the love and support, Alyssa! You’re always so sweet. 💖
Positively Alyssa
November 27, 2018 9:14 amWe all definitely a little support over time. I am always glad to be your cheerleader Beth!!!