#ms warrior

🎗️🧡💪MS WARRIOR💪🧡🎗️

I went to the Texas State Fair today. I rented a scooter, so I could get drunk and run people over! ٩( ᐛ )و

But really I have MS, so I absolutely need it. It was so much fun! Also - why do people step right in front of a scooter/electric wheelchair? Do you want life-long ankle pain?

The most frustrating part of having MS (Multiple Sclerosis) is trying to explain it to other people. Being sensitive to heat. The fatigue, needing to take breaks. Cog fog, problems managing tasks, poor short term memory. Balance problems. My right side, down my right leg is numb so I fight the heaviness while walking.

But I know people see me and think I look fine. Everyone has seen YouTube videos of people with “MS” who are running marathons or who changed their diet and now “cured.” Everyone knows someone who has it or knows someone who knows someone. And with that, there’s the horror or hero stories. If you try to explain it to them technically, their eyes will glaze over and you realize they’ve stopped processing what you’re saying. You just want to say, “here watch this video!” explaining the condition

After having been diagnosed with this disease two years ago, (I’ve actually had it much longer) with over 50 lesions on my brain MRI and 4 on my spine, I can say I’m technically stable. My first follow-up MRI had 3 new lesions, my last had none. But I’m getting worse.

PIRA (Progression Independent of Relapse Activity) is a relatively new concept in MS. Some neuro docs believe it exists, others don’t. I do believe it, but I don’t think my MS doc does. I mentioned to him that I felt I was getting worse and I got a bit of an eye roll followed by he didn’t see any new lesions anywhere that would cause it, and my brain volume was good. He suggested it was depression or sleep apnea (I was tested, it wasn’t). He never does an exam on me for anything MS related so how would he know if I’m getting worse?!!

I don’t believe every testimonial on YouTube, I don’t think any diet is proven to be better than any other, and there’s a lot out there “for MS” I think what’s best, depends on the individual. If you have problems with gluten or dairy, and some people do, don’t eat it.

I mostly try to do a “healthy heart” type diet. I do try to avoid processed foods. I might have 2% milk with cereal a couple times a week. An ice cream cone every now and then. A sandwich on whole wheat bread on occasion. I can’t say any of those things make me feel worse. I do fast before work, I work 3 12hr shifts in a hospital. I found that I feel worse if I eat before work so I don’t, I wait for lunch. Something about the energy to digest food while I’m trying to hit the ground running, slows me down and makes me sluggish. I don’t run marathons, but I do have regular exercises I do to try and stay mobile. I know if I get lazy and skip a couple days, I feel worse.

So I know diet and exercise affect how I feel, I just don’t think it’s the cure some people claim it to be, at least not for me. The damage MS has done is still there, waiting beneath the surface. Waiting for me to get too hot, too tired, too sick, or too overtaxed by the day. Sometimes it surprises me. I overextend myself not even thinking I’m doing anything particularly taxing. Then I just need to sit or lay down.

Well, that’s my MS story…

🍭 Yo! Yo! Yo! How’s everybody doin’? Good? Good! Now say it with me! Let’s go! R-A-M-U-D and A Who’s that? Ramuda! 🍬

📷: @mattew_rey

Happy disabled swiftie night! Here I am protecting myself from a client who informed me yesterday that they have strep throat. I have MS and my immune system is shot. Usually I’d just wing it, but I’m going on a cruise this weekend and I’m not about to get strep throat. SO. MUCH. PLANNING. goes into everything when you have to take an illness into account. Hope all my fellow warriors out there are well. 💜

hey guys i know we’re all fuckin poor and shit BUT my mom is doing a crowdfunding thing for a mobility device and while selma blair’s MS foundation has donated almost half the cost she still needs another $1200 to get this mobility device.

tl;dr my mom has multiple sclerosis and currently is using a cane, but it’s not the most helpful because she has balance issues. there’s a bunch of info about alinkers thru the link but basically it’d be the most ideal mobility aid for her needs, but they cost $2200 and aren’t covered by insurance nor can you use FSA money towards the cost because they’re not considered a medical device by the government.