#fuck ms

[furthermuchmore]

[lisaiswildlyunpleasant]

I received my MS diagnosis about year after Teri Garr went public with hers. Listening to her describe her symptoms was what sent me on the long exasperating journey to get my own diagnosis. I loved her in everything I saw her in & she kind of low key saved my life & now she's gone. No more pain, no more suffering, no more Ocrevus or Zanaflex. Rest now, Queen.

[prompt-master]

Not a single day goes by where I don't hear Ena short music playing in my head as background music

[xelishiken]

There are times when...

...times when I just feel right about pushing people away to keep my damn sanity. This is one of those times.

[xunxusual]

So I walked today for a good 3.5 miles, my legs hurt aha but I did it for a good cause, Walk to end MS @ the Rose Bowl ..

[evaisgreat]

the beginning of my MS story

originally written on June 2, 2012

diagnosis: MS 

After the doctor said I might have MS I did some research on my own and concluded that I had about a 90% chance of having it. When I told this to people, they told me to be optimistic. I know, that’s what you’re supposed to say, but it annoyed me because I was presenting them with data and they were telling me I was wrong.

Well I wasn’t wrong and got told that twice last Thursday. Honestly, I took it like a champ. But I was also expecting it. This time I could listen to what the doctors were telling me. Instead of two lesions, they found five. This time they took time and showed me where they were. They didn’t discuss my blood work or my urine results, I guess there were were ok.

Throughout the day I was live reporting what was happening on twitter and Fubs. The guy that I was seeing, who from this moment on shall be known as The Worst Man In The World or TW for short, read my updates and even liked one of them. That was the last interaction we had as he disappeared after that. Yup, no check ins to see what’s going on with me or if I’m ok. Nothing at all. I mean, I knew he was a dick, but he took it to another level. But I digress.

When my mom left, I had a chance to breathe and got a little freaked. I also had plans to drink with my bff so we did that. I drank and shopped and that’s how I made it through the day. But the next day it all began to sink in. And that’s when I started eating and drinking my feelings away. My therapist would be so disappointed that I didn’t “sit with my feelings.” Fuck that. My feelings freak me out. And so that’s what I did all weekend.

My mom told my dad and I didn’t answer his call because I couldn’t handle talking to him. And then I went to work where my boss knows and the first thing she asked was how was the doctors. I got chocked up when I told. I surprised myself. And it got increasingly harder to tell people. So I did what I always do, wrote everyone an email and called it a day.

I started reading Multiple Sclerosis For Dummies. Let me tell you, this book stresses me the fuck out. They were not lying when they said ignorance is bliss. I do not want to spend two chapters reading about all the ways my body is going to fall the fuck apart and how there are few medicines that will help me. I don’t want to hear about how walking is overrated and what’s important is mobility and that I can decorate my cane so I can feel better about it. What in the entire fuck? Yeah the fact that my wheelchair is covered in hot pink glitter totally makes me feel better about not being able to walk. I get that they are trying to be optimistic. I understand that any mobility is a good thing. But I treasure everything my body can do. I treasure my independence. And I can’t handle that this disease has the potential to take everything from me.

I can go blind. I might not able to swallow. My speech can become slurred and people will think I’m drunk. I can have random pains all over my body. I can lose the ability to walk. I can have body tremors. I can lose my memory. It can become harder for me to learn. I can lose control of my emotions. I can become incontinent. I can have a host of sexual problems. I can become so fatigued that quitting my job will become a reasonable option. All of this can cause me to become a burden to my family and my friends. I can’t even think about dating anymore because I’m not sure what kind of shit show my life is going to be when I’m older.

I keep telling my friends I’m doing fine. I’ve been on a food and alcohol binge for almost a week now. I’ve lost my metro card (or more likely someone stole it while I was sleeping on the train). I’ve fallen asleep and rode the A train to both ends. I almost slept with the wrong guy. I’ve gained 5 pounds. I’m not sleeping well. I am a mess because I can’t figure out how to cope with this shit. And my friends encourage my bad behavior because it makes for good stories.

My coping mechanisms leave so much to be desired.  I’m trying to do better.

xoxo, e

post script: I’m a million times better than when I was when I wrote

[destinationtoast]

*

[nyxwoven]

if the nerves in my face don't stop buzzing im going to rip my skin off 🫠