6.29.2017

MS Relapse - 9 Ways to Survive Steroids

It’s not clear if I’m having a true relapse or if this is just faster progression than I’m used to. I’m in that murky relapsing/borderline/progressive, transition period.  Regardless of what this is or isn’t, my neuro and I decided to throw some steroids at it and see what happens. Roll the dice. You know, like most MS treatments.

I’ve had heaps of experience with IV solu-medrol/prednisone, so I know what to expect. These infusions are always a tough week for me, because I am a delicate fucking flower, so I like to have a plan.



Drugs
I never leave my doctor’s office or MS clinic without a prescription for something like ranitidine (to kick the stomach acid) and something (strong) to help with sleep. I usually ask for horse tranquilizers and get a dirty look, but at least I leave with zopiclone. The side effects of solu-medrol are well known, but some docs wait until you call back the next day because you've been awake for 26 hours, before they offer you an RX. Don’t suffer. You need them and they help, so ask. 

Snacks
Even with ranitidine, my tummy acts up. Some find their appetites increase (especially on an oral dose), I always have a painful tummy so I keep crackers, cheerios, toast, and ginger ale on hand. Homemade bone broth is better than packaged soups because of the sodium, which you wanna avoid because things are about to get real puffy.
Note: If you can't put down the chips because you love salt like I do, just know that your face is going to look like a pie for awhile and accept it. Don't let anyone take your picture and maybe cover all your mirrors.  

Fluids
For the first time ever, I don't mean booze. You have to hydrate like hell with actual H2O because prednisone means water retention. Like, stay out of the rain or you will probably absorb and retain that too. In addition to all the water-weight, this drug is constipating AF so try to get ahead of that. Whatever your bowel routine is, double it. 
Note: I still drink coffee because technically, it's a diuretic and also, I don't want to lose my damn mind. Let's face it, I'm gonna be awake anyway, might as well be pleasant. Bonus: My bladder is normally a wreck but it's always more chill when I'm on the juice, making it easier to pound fluids.

Stuff to read
When I’m wide awake in the middle of the night, it’s tempting to turn on my laptop and write. Or read gossip blogs. Or shop. I’m feeling wired and creative and a little bit sorry for myself, like I at least deserve a new lipstick, maybe some shoes, just for having to go through these things. Resist. Screen time in the middle of an insomnia attack is def going to encourage wakefulness longer than flipping though a magazine or reading a book will. Sleep is essential to healing so it's important to keep the tech turned off. 

Sunscreen
We covered pie-face, but my normal alabaster complexion has a tendency to turn fever-red on this drug, and steroids at this dose can cause photo-sensitivity, meaning easy burns. If you’re a pasty-faced, day-walker like I am, make sure to wear your SPF 60 even if you’re only out for a quick minute. Then again, if you’re also lazy like I am, just don’t go outside. 

More drugs
Don’t skip your regular meds. This isn’t a drug vacation. I know, sometimes I’m just so sick of putting pills in my mouth all day. But it’s important to stick to your routine. Throw in some calcium if you’re not already doing so. Steroids can turn your bones to dust. You still need your bones.  

Namaste
Don’t trust your emotions when you’re on solu-medrol. And maybe warn your friends and family. Everything is more intense, and on top of it, you’re having a relapse. Know it’s the powerful drugs coursing through your system and don’t dwell on it. If you do lose your shit and bring the drama, you have an out. Blame it on the drugs and apologize. You weren’t you.

Hiccups
Oh yeah, hiccups. This is a WTF symptom that sometimes happens on steroids. I don't know how to fix this, but in researching this article I learned that there are actual hiccup support groups for people taking solu-medrol. I mean, if you have MS, hiccups are probably the least of your problems. Then again, when I have hiccups, I make a big fucking deal about it. I will cry real tears and ask why everything bad happens to me. Then I plug my nose and chug a glass of water until I'm sure I'm about to drown. If I survive, I log onto JCrew and buy a dress, because I've just been through hell and I deserve it. 

Netflix
You might feel like cleaning the gutters, rotating your tires, moving a piano, I don’t know what you’re into, but this is artificial energy and you will have to pay it back. Remember your body is healing and you need rest to let it recover. As tempting as it is, try not to do the thing (that is to say, all the things) we all want to do the second we feel that unfamiliar boost of strength or energy. 

Steroids can have impressive effects, especially in early RRMS, they can feel like a freaking miracle. Over time, the results can be less thrilling. Fingers crossed, but remember, they’re not a cure. After 16 years and probable SPMS, I’m chasing that dragon and don’t expect to see loads of improvement but even a tiny one would feel like a win. At least until something better comes along.  

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6.15.2017

6 Annoying Reactions To My 72 Hours In A Wheelchair

The Banker and I have just returned from a fantastic long weekend in NYC. In my day to day life, I use a walker or cane, but long days of traveling call for my convertible walker/transport chair, Optimus Prime. So, for 72 hours I had the concentrated experience of hearing the questionable things people feel compelled to say when they see someone unexpected (young? pretty? cool hat?) out for a push in the park. Here's a sampling of some of the mouth garbage we heard.

    Seriously?


1. "Can she walk a little, or..?"
 
The first questionable comment came at airport security when the dude in charge of scanning our bags decided to speak to The Banker instead of me. I'm not sure why he assumed my ears, mouth, and brain didn't work, but it felt so satisfying to loudly declare, “You can speak directly to me”. He apologized. 

2. "You have to go across the street to the second floor"

We arrived at the Shubert Theater on Broadway, full of excitement to see Bette Midler in Hello, Dolly. Fortunately we got there early, because when I asked about the bathrooms I was told the ‘accessible’ ones were across the street. On the second floor. Of a busy restaurant. It would have been nice to know this ahead of time. Like, when I booked accessible seating for the show. There would be no champagne at intermission. 

3. "Nice seat"

In addition to those who talk to wheelchair users' companions instead of engaging directly, there are those who infantilize and treat you like a little kid; who will touch you and pat you on the head. During my dry intermission, a woman approached me, rubbed my back and told me I had a nice seat. Like I was 5. Was she just trying to be nice? Maybe. I don't care. This is weird. Unless you're my mother, please don't touch me and there, there me. You don't know me. 

4. "Esti intr-un scaun cu rotile"

While rolling down the street, an old Romanian (probably?) woman rushed me saying something along the lines of the above. Technically, I don’t speak Romanian but I'm pretty sure she was saying "You’re very beautiful." Look it up. 

5. "That’s the best way to see New York City."

At the end of a long day, in the elevator at the hotel, a weary woman looked at Optimus longingly and said the above. The Banker was not having it and told her so. She doubled down and continued complaining about her sore feet. The Banker told her not to complain about walking, to someone sitting in a wheelchair. Like, duh. This seems pretty obvi, but you'd be surprised at how many times I've heard some version of this. Lucky for her, we arrived at her floor and she left the elevator in a huff.

6. "This would have been a lot easier if you could stand."

Oh, really? Please, tell me more about how this affects you. This pissy comment came from the crusty TSA employee who's job it was to give me a pat down/deep-cavity search at airport security. She seemed really put out that I couldn't balance without a cane. So, I made a scene. 


Despite this rant, I'm not actually a bitter, old, wheelchair lady, hell-bent on politically correct language. I get it. I'm different and for some reason, people need to point that out. I'm still getting used to this new version of myself, and the reaction it provokes in others can be frustrating. I'm learning to roll with it for the most part, but  I don't think my big, loud mouth is ever gonna let it slide when it's way outta line (TSA lady, I'm talking to you). 

Traveling with MS requires a little extra planning and patience but it's worth it. And, it wasn't all side-eyes and throwing shade. We had many positive experiences. We encountered one NYC traffic officer who was exceptionally friendly and helpful, an excellent ambassador to the city and others who were eager to make sure we had a comfortable and easy time in the city. 

Mad love to The Banker, who is a pro at navigating OP through the city, in and out of cabs, boats and bars and never, not ever, makes me feel like any of this sucks for him. 

New York, I still love you.

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