Patient, calm, Zen-Beth has left the building, folks. She’s been replaced with Can-We-Get-This-Show-On-The-Road-Beth and you know that’s not a good thing. Not a good thing at all.
Let’s see…where have we been? IN MY GODDAMNED HOUSE, THAT’S WHERE WE’VE BEEN. The Lemtrada after-effects have not dispersed as quickly as I would prefer, meaning I’m still pretty much stumbling around like a crippled drunk, using my rollator in the house and trying not to fall down just going up and down the steps to pee. And dudes, if I may call you dudes and I feel like I can, I pee a lot. Many many many times.
I’ve started having the things I was told to expect but nothing as bad as I was prepared for. I have the headaches. I have the bone aches. I have the hot flashes that take me from freezing cold to burning hot within seconds. I have quasi-paralysis that nobody seems to be all that concerned about. The Great Scott tells me I should start feeling better any day now, but as of this day, that has not occurred.
Several annoying events occurred in the past few days that meant I had to leave my home today. WHOAH. Banner day. Kind of?
First, one of my only credit cards was fraudulently used on Thanksgiving night to buy some giant electronics that I obviously didn’t order. Had to cancel that one immediately. Then, when trying to deposit some money into my account via the ATM machine a few days later, I somehow drove away without my ATM card. And with the checks not deposited. I know. I am an amazing creature. Now I have no credit card. No ATM card. And no cash. I’m home-bound, people. This requires deliveries and the ability to pay for things. I had to go to the physical bank branch to get these things taken care of today.
When I got to the bank, not only were all of the handicapped spaces full but all of the parking spaces, period, were full. Because of course they were. I parked illegally in a place very close to the door, with the casual fuck-it attitude of a woman desperate for money and dragged my quasi-functional legs into the branch. As I was stumbling back out again, I got a call from Evil Nurse Carol who has been forced to pay attention to my calls for help now that I am on this mack-daddy drug that can cause all manner of weird shit to happen – and let me tell you, dudes, it’s happening. The weird shit is happening.
I discovered a rash yesterday while attempting to take a shower. It was in a very…inconvenient place. I appeared to have developed a rash in my groin area and I was in a mild panic.
I had just been talking about how my Lemtrada side-effects had been basically non-existent. I mean, yeh, I can’t walk very much at all right now, but I’m almost used to that and I was cultivating patience and calm and all of that shit but when one turns up with what appears to be the creeping crud around my groin area all of that balanced calm flies right out the window. Just typing the words “my groin area” in a blog post is kind of a step too far, isn’t it?
Well, when I had to ask my mother to photograph said rash while ensuring that it wasn’t pornographic so I could email it to TGS…well. That was a step right off the edge. Sending tasteful nudes to your very stoic, low-talking, genius MS Specialist is not high on one’s bucket list but hey! No matter. I added it and then crossed that shit right off that list because I just did it. I sent a picture of my body, privates-adjacent, weird ass rash to TGS around midnight last night after finishing watching The Wire and obsessively googling Lemtrada-related rashes and working myself into a quasi-panic. I proceeded to:
1. Send the email of my tasteful, nude, rash to The Great Scott wherein I apologize not once, but twice, for the picture attached. Neurologists probably aren’t used to getting tasteful nudes of their patient’s nether regions. They studied brains just to avoid this particular situation! For the love of all that is holy…I hit send and shuddered. My credit card had been hacked! How hard could it be to hack into the AHN MyChart system? How long before my tasteful nude pic was all over the damn internet?? I have tattoos! They are identifiable marks! OH MY GOD.
2. Buy a bunch of random shit on Amazon.com using my American Express card since it’s the only card I now have that will work. I bought random rash-fixing, anti-bacterial, anti-fungal, anti-everything I could get shipped overnight to assist me in making sure I don’t end up in the ER from a groin rash. I mean, if after all of this bullshit I would end up in the ER for a weird privates-adjacent angry red creeping crud…It was just too much.
When the packages arrived today they included not one but four boxes of Vagisil (not what I needed nor is it something I have ever used in my life); several bulk packages of soothing anti-bacterial wipes safe for privates-adjacent usage because OBVIOUSLY. They arrived today too. They were from a brand call Dr. Soothers! They were called “healthy wipes!” How could a panic stricken rash-having lunatic pass up that packaging! She could not, reader, I tell you. She may or may not have a job that involves making packaging for a living and she fell for packaging and a hokey brand name!
Dr. Soother’s, indeed! Thank god they are pH balanced! I mean, what consumer doesn’t love a call-out burst like that on the front of a package? Who could resist that? Not me, BBADdies, not me.
Turns out I needed something different that TGS called in to my local pharmacy, so now I had to make another trip from the bank to the pharmacy. It is freaking cold out today. Falling temperatures made the air biting and the weird light rain turned into what felt like being pelted with little ice needles. And here we are, Clara my fancy Danish rollator and me, rollating all over the damn place in search of a cure for a strange Lemtrada-induced intimate rash. What the hell? Whose life is this???
I got my reasonable Rx cream that should actually clear up the rash. ENC never mentioned my tasteful nude (thank the universe for small favors). I made it home and promptly collapsed. That little adventure had whipped my ass so completely that my legs could barely carry me up the steps to pee, yet again, when I got home. I promptly donned my clean pajamas. I am back inside where I belong, prescription in hand. New ATM card procured. Checks deposited…a few dollars in my wallet for random delivery-related tipping. Ass entirely kicked.
Today was my last “vacation” day before I technically return to work tomorrow.
Of course, I’m returning virtually for now. I’m clearly in no shape to be out cavorting about in my office full of germs and places to walk to and from on legs that are still more dragging like dead things rather than ambulating like a human being should. I’ll be easing back into the game by re-joining the corporate world virtually from my living room (thank god, again, for my amazing employer that enables this to happen). I am very happy to think about having something else to think about that isn’t my stupid dysfunctional legs or my concerning, privates-adjacent creeping crud.
I am desperate to remember life before Lemtrada!
But above and beyond all of that, I’m starting to get really impatient with my so-called recovery. I mean, the leg cramps have stopped. Winning! Kind of, because when the leg cramps stopped the headaches began so it was kind of a wah-wah-wahhhhhh moment. My legs are not bouncing back by the end of the week, as TGS told me he hoped they would. They have decided to take their good old time coming back to being legs. Just be what you are, legs, how hard is that? I’M SO OVER IT.
But I can’t be over it. I know this. I know there is no being “over” any of this.
There is just talking myself into being patient, kind, gentle, DID I SAY PATIENT AND CALM?!?!? Yes. I guess I did. I’m a failure at finding my Zen. It only took two weeks. Apparently, I have two full weeks of patience in me and then BOOM, patience runs out. I’m bereft of patience. I’m ready to move on. I’m ready for the light switch to flip. That was an analogy I read on a Lemtrada support Facebook page from a woman who took a while coming back after Round 1 concluded. She said one morning she woke up and it was like a switch had been flipped and she felt more normal. Not normal-normal! I’m not that unrealistic. But better. More normal? Normal-ish?
I’m ready for my switch to be flipped. I’m ready to go back to having a routine where I wake up, get dressed, walk out the door and head to work. Get there. Complain a little about work – because I used to complain about work! Can you even believe that? I complained about work. Now I dream about being able to go to the office like it was freaking Disneyland and I’m an 8-year-old full of energy, wearing her Mickey Mouse ears.
Apparently at the beginning of week 3 post-Lemtrada is when I figure out how full of shit I am and get back to being super irritated about this freaking MS life full of little indignities, bizarro pains and giant inconveniences like legs not acting like legs.
I have to go now and prepare my mother for her friends telling her that I wrote a blog post about our tasteful nude picture taking adventure and re-read my last blog post where I was so fucking wise, I even impressed my self.
Anyone need some cheap Vagisil? I will ship.
Doreen
November 26, 2018 8:49 pmOMG Beth, you are too much!! You have a right to be “over it”. Been there, felt that way. Keep fighting the good fight, girl. You will have your switch flipped, I just feel it. BTW, if you ever need something for a rash, any kind, try Calmoseptine. When my appendix burst and I ended up in ICU for 3 months (talk about being over something), the nutritionist told me about it for a rash in all (yes ALL) my nether areas!! It works, sometimes the cream is cooling which is needed at times. I look forward to the day that you write about how amazing you are feeling.
bethnigro0212@gmail.com
November 26, 2018 8:55 pmOMG Doreen! three months in the ICU?!?!?! That’s what I needed to hear. Talk about a reality check! Good lord. You are my new hero. And thank you for your kind words. I’m still feeling optimistic which is crazy probably but I guess it’s a better option than the alternative? <3
Doreen
November 27, 2018 8:16 pmYou definitely need to be optimistic. I wrote to you before, I had tried Ocrevus. Not sure you remember me or not. I’m not offended if you don’t. The reason I am telling you that is to remind you that there is ALWAYS hope. i told you about the ECT treatments I received. We have been through a lot, I mean, more than I care to remember, but, we have made it. In November of 2006, my husband was told to make final plans for me. After my appendix burst, I developed a fistula and had about 15 surgeries to take care of sepsis. BUT, I lived, I am almost whole (minus a belly button), I have 2 sons, 5 grandchildren and 1 on the way. Life is good, no very good!! I have complete faith that you will come out at the other side of this and be Great!! Keep up the good fight and when you feel down, remember one thing…..IT CAN ALWAYS BE WORSE. Feel free to friend me. DoreenEspinosa on Facebook.
bethnigro0212@gmail.com
November 28, 2018 6:00 amYou’re so right, Doreen. Excellent reminder. 💕
angelagagz
December 2, 2018 7:42 amI may have cracked up after reading about your rash! Hope you’re on the mend!!! 🤞
Betsy Riley
December 3, 2018 7:15 amI know what you mean about the photos. My mystery rash photos stayed on my phone so I could just show them to my GP and holistic chiropractor. I think you are dealing with stuff very well.
bethnigro0212@gmail.com
December 3, 2018 7:34 amTo be honest? Mine is still on my phone too. 😂😂 I was afraid I might need it again and I didn’t want to have to ask my mom for another photo shoot. 🥴
Positively Alyssa
December 3, 2018 9:31 amAll I can say is, Damn girl you have been through so much and still hold onto your optimism and great personality! Your ways with humor ALWAYS brings light to my days. Even going through a very uncomfortable situation you still bring so many ways to look at things in a better light. You really do have the best attitude about life Beth and I appreciate that I have been able to get to know you! Sending you lots of positive vibes sweetie!
bethnigro0212@gmail.com
December 3, 2018 10:34 amIt’s been a little crazy lately for sure. But I’m taking a bed day today! Trying to listen to my body as it tries to repair itself. Easier said than done! But I’m trying. 👍🏻💕
Positively Alyssa
December 3, 2018 7:32 pmAll you can do is try Beth and please try to not over do it! It really is important to listen to our bodies even when it isn’t easy! You my dear are much stronger than you will ever give yourself credit for. I admire what you do and how you do not give up!