I don’t know of any other way to describe the past week except as a shit show. And maybe that points to how juvenile I am, but I honestly can’t think of a more sophisticated word. If you read my last post, you can see that I was in a bit of a bad way last week. I crashed really hard last Monday and was feeling pretty deadly. We did the normal protocol and quadrupled my hyrdrocortisone and I mostly stayed lying on the couch or in bed, researching the little amount of money spent on this illness and writing somewhat of an angry blog about it. I don’t usually like to succumb to moments of mental negativity like that. I think anger has its reasons for existing, but I have always wanted this to be a place of optimism, humor, and hope. So I hope I didn’t put too bitter a taste into the community here. I also need to remember that more research than ever is being done, and while we do have a ways to go, we’ve already come along ways. I’m not going anywhere, and no matter how far agencies like the NIH and CDC take the research, the goal is always to be as happy as possible, with whatever you got. The other goal of this blog is to promote awareness, and so maybe my little moment of anger can help do that in the long run. I think the best thing it did was inspire many of you to comment or email with your stories. Many people say it helps them to read this blog, and the truth is, it is just as helpful for me to hear from you. It’s easy to get so lost in your own story that you only see yourself in the world. The truth is no matter how poignantly real it can feel sometimes, we aren’t alone in this, and that’s maybe the most important thing to remember.
On Sunday morning I had started to bounce back from my week-long crash. I thought. Part of the “Shit Show” of last week was that on Monday, our kitchen flooded due to a leak in the wall. It was going to involve some major reconstruction (basically knocking out every wall in the kitchen) but they assured us it would only take a week. My sister thoughts were that we should move apartments. She’s all too familiar with how long a “week” takes in contractor time. But the idea of even packing my bags in a suitcase felt devastating to me, and luckily my brother-in-law was in no mood either to up and move overnight. So we decided to stay. But a few days later as I was walking through the hall, water seeped up through the carpet onto my feet. Never really a good sign. The workers came back and found the leak had begun to flood the master bed and bath and the front closet. By Friday morning, I was still pretty crashed and somehow there were 5 workers in the kitchen beginning demolition and making a shit ton of noise. The noise permeated my dreams but I stayed sleeping. If you can call it that. Keegan came in my room a few times asking if I wanted to go to his parents house to sleep, but the idea of getting in a car and going felt like too much. I said no, rolled over, and went back to exhaustive sleep. The demolition went on.
By the afternoon Keegan and his friend were moving the big stuff out to an apartment across the street. I packed in the laziest sick person way possible. I honestly didn’t have a lot of stuff, but what I did have I threw in two boxes Keegan gave me, and left all my clothes on hangers. Keegan and his friend moved my bed first and the couch so that I could literally go from my bed in the current apartment to my bed in next one. As they moved it on the first load, I laid on the floor in my empty room with Monty and fell asleep staring at the ceiling. I watched Keegan and his friend carry heavy things and sweat and noted how interesting faces look when you’re looking at them upside down. Here are some pictures of me during the move.
As you can see I’m a big help. Anyway in two days, Amelie and Keegan had everything packed, moved and unpacked, and I laid there watching life walk back and forth carrying boxes over my head. It was a new perspective though and I’m always down for new perspectives. My favorite line from the whole moving experience came from my sister as she was unpacking in her new bathroom and I was laying on the couch counting ceiling popcorn. “Our fucking toilet is leaking!!!!!!” This was after three cabinets fell completely off of their hinges in the kitchen and the sink pipes leaked underneath when you turned the water on. When it leaks, it pours. If I could consume alcohol, I would have played a drinking game called “Drink Every Time Something Breaks” and had a gay old time. Instead I slept or played DJ for Amelie and Keegan while they packed and unpacked–which mostly consisted of me playing Carlae Rae Jenson’s “Call Me Maybe” on repeat. God that song is good.
By Sunday we still didn’t have cable which meant we WERE WITHOUT OUR SUNDAY FOOTBALL and my sister was WITHOUT THE RED ZONE ON ESPN which meant she COULDN”T TRACK HER FANTASY TEAMS ON A PLAY BY PLAY BASIS which was a problem, you can imagine. So we went to a bar with 4,000 TV’s and I felt sad as I watched the Saints lose in overtime and was the only Saints fan in the joint. I still yelled ‘Who Dat’ if ever so quietly. Unfortunately my body felt like it was slowly slipping away from me. An hour later when sitting upright felt near impossible and I felt a migraine coming on, I went home and fell straight asleep. Whatever momentum I had felt that morning was long gone and when I woke up a few hours later I had the migraine of the century, which lasted until yesterday. I didn’t fall asleep until 4 on Monday morning and when I woke up, I was more weak than I’d ever felt. I took Monty outside, but with this new apartment comes a flight of steps to get to ground level. I hate those steps, and I cursed every last one as I climbed them one by one, the way old people do. I threw the ball for Monty a few times, then apologized to him for being a human wasteland and came back inside. I set up camp on the couch and wondered what had happened to my limbs over night. It was like the cement fairy came over night and filled my whole body up. Thanks cement fairy!!
Yesterday morning I didn’t think I felt any worse until I tried to get out of bed. It was really hard to move. Nearly impossible to walk. I didn’t feel like I could make a fist. I wasn’t sad but I kept breaking down in tears, I think because I was scared. This felt different; worse than it’s felt before and I was nervous this time I might actually croak. Usually I just curse the illness, roll back over and go to sleep. Anyway, going to the ER is always a last-case scenario but after talking to Dr. Emils (one of my best friends in her last year of med school), my mom and my sister, we decided it was the best option. At least we could eliminate the possibility of eminent death since I had been getting worse over the week and the iv fluid and steroid would help with the weakness and get the migraine to go down. So Amelie left work early, helped me up the stairs and I cried as I said goodbye to Monty because I really didn’t want to leave him and I was also scared I’d get bad news at the hospital. It was the first time I found myself praying they wouldn’t find anything, because usually I’m looking for an answer. This time I just wanted the normal “We don’t know exactly what’s wrong, but here’s something for your discomfort.” Luckily, that’s what I got. As well as kind nurses and doctors and basically no wait time. A whole other world compared to the New Orleans hospital last January.
So, that brings us to the present. The good news is I’m not dying. I only feel like I’m dying. Haha. But, that I can handle. For some reason I woke up with swollen joints this morning, so it’s just another reason to take it slow. It’s also a creative challenge to see how many fun things I can do from the supine position. I don’t know what this crash is about, but it’s just going to take some waiting out. The best part through all of it is I realized just how much I didn’t want my sometimes shitty life to be over. I had been pretty down the last week being sick. I felt myself saying “Owell” as a speeding car raced past Monty and me on our walk and I entertained the thought of it taking me out. It was just my dark sense of humor of course, but now I say “No way JOSE!” to that car, and I live to see another day. Even if from the couch. Sorry for the length of this one. Like I said, it’s been a shit show of a week
Health, Happiness, Shit Shows.
13 thoughts on “A Shit Show.”
I love the hospital gown comment! I wish I thought of that during my radiation!! Be well,be strong!
I’m sorry you’re having an extraordinarily rough time/possible flare up time right now. It always seems to know right when to attack, doesn’t it? I would be lying if I said I had any magical answers, because if I did I wouldn’t be in the same situation right now. But, if I discover any ‘feel better fairy dust’ or something, I’ll let you know. I’ve been in the middle of a particularly bad flare-up plus a virus & infection, so even though my home isn’t retaining water, I’m having quite the shit show myself. I feel like we would be perfect sloth-like roommates, but I’m a little far from you.
Until I discover and share that fairy dust, read one of your favorite books, blogs, or anything else you can do to . Doing those seems to make my mind focus on something else besides my own pain, so hopefully you have your ‘go-to list’ of things to do (I’m not counting sleeping, because I know we both already do that about 14 hours daily). Hang with Monty, do some onine shopping/window-shopping, and try all to convince/remind yourself that this awful, terrible feeling has passed before and I have no doubt it will pass again. Knowing I’ve survived the immense pain and exhaustion and come out on the other side other times is something that keeps me going, and I hope it does for you, too.
Best of luck, Mary, and let the storm run its course.
I love your blog, let me just say. I think even posts like this are “upbeat” because you write in the way I try to – open, blunt, seeing that it can be funny (loved the pic of you laying on the floor, and the quote on hospital gowns) but you really bare your soul. I related most with the crying out of fear, and desperately hoping they don’t find anything new. I hope that every time I go to the hospital. In the beginning I wanted answers, I guess now I prefer ignorance.
I also cry about leaving my cat. And sometimes I cry about leaving my coworkers – not WORK, but my actual coworkers. Hubby can attest that there have been times when I was drugged up at the hospital and crying because I missed my boss and didn’t want him to be mad at me for leaving work early because he’s such a good boss and a good friend. (funny how when I’m lucid I’m so quick to hate his guts!)
I’m glad you’re getting some time to rest. It’s always close to impossible for me to enjoy resting, but try to anyway. :)
Also, I once slept the whole day in my third floor bedroom while workers were replacing the roof tiles right above me. And probably looking down at me through the skylight. When I did wake up for a few seconds now and then I would think, that is the loudest banging I have ever heard (I think it was a nail gun, about three feet from my bed), then immediately fall back asleep.
May your shit storm subside and rainbows brighten your day. If your Lyme was flaring I have a suspicion steroids may have worsened the flare-up. I’m back on Doxy for what I swear is the tenth time this year. Stupid spirochetes. I hope you have many, many days,weeks, or months before the next crash.
I just wrote a reply and it showed up as Anonymous because I never read directions. If I did then I would forget them anyway. Just wanted you to know I wasn’t a coward. My name is Carol. I live in the sticks of MS. and no, please do not allow the ideas of the movie ‘Deliverance’ to pop into your mind. Things are a changing down here.
Thanks Mary for once again making me feel better with your posts. Not that I am happy about the problems you are going through, just that it helps me put things in perspective. It’s tough having these problems and I can relate so well to you. Dark thoughts come and go but don’t you ever act on them. We love you and we need you here Mary.
Just when I thought I was having a shit show of my own, you go and outdo me! Damn it…there goes me feeling sorry for myself. Well, you keep writing and making us laugh (with you, of course!) and we’ll keeping hoping and praying for your health and happiness.
Even when you have a shit show of a week (or 2 ), you still brighten up my perspective. I’ve tried to describe to normals what it feels like when I have a “moving through peanut butter” day. When it’s alittle better, it’s a “moving through pudding” day. I haven’t had the cement feeling for almost 2 decades, but I remember it well. I couldn’t even hold a pen to sign my name. Thank you for writing your blog even when you feel like shit. I’ve had a rough week or so myself. And just when I thought I could get relief for my off the pain scale feet, my good ole insurance company nixes the spinal stimulator trial. Hate it!
You’re a bright spot in my life. Hope you feel “your normal” soon.
Just to let you know that before I started reading your blog I literally thought that NO ONE could ever understand me and that I was CRAZY. Many of my friends have disappeared from my life (because really who wants to hang out with their friend who sleeps all the time). The only “person” I could count on to hang with me was my black cat Ozzie. I’ve been lucky enough to somehow keep my job but that surprises me on a daily basis. I have no diagnosis yet because well, my doctors SUCK and feel that they can just throw a bunch of pills in my direction and I’ll stop whining. Anyway, enough about me….I just want you to know when I’m having my really bad days, I read your blog and I don’t feel like I’m SUCH a weirdo. You inspire me to look at the bright side no matter what. And that helps me feel a little less sorry for myself. Oh and it’s ok to get mad because I get mad too and you getting mad is just ANOTHER reminder that I’m not the only one out there who thinks that this just isn’t fair but we gotta keep on living anyways. THANK YOU! P.S. I hope you feel better soon!
So sorry bout your shitty move and medical crap… and the no cable? So unnecessary- doesn’t the universe understand that we are delicate?
And the emergency room- ugh.
Dude! That settles it sister…you’re allergic to leaky toilets and “call me maybe”! Feel BETTER! C’mon! We miss you.
I love your blog, Mary. It *does* help me to read it, and to read everyone’s comments. And I love your humor and your perspective.