#rrms

[gayaest]

🩷🌼🧿 Ari — “Lion”, an artsy gamer who enjoys anime, cartoons, and an eclectic music taste 📒🌀

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[future-muse]

This is the first part of that fiction I'm working on but I edited some of it what do you think I can post the next chapter if you like it.

Prologue - a stolen life

When I was born I siphoned life away from my mother. I don't think I was supposed to live. I was too young and my heart was too small. But I wouldn't die. I had three surgeries before it finally stuck and by then my mother was gone. She had primary progressive MS (PPMS). She died too young and since then I've wondered how long I could live off a stolen life. I started presenting symptoms when I was 8 years old. Most of the doctors didn't believe me. I was diagnosed 5 years later with Relapsing - Remitting MS (RRMS). Sometimes I wish we shared that one thing but we don't. I'm named after her. Or I was. My first name was originally Blair but when I was older and with my parents I couldn't hear the name without crying. So they made it my middle name and now I'm Winnie. It sounds like a childs name to my ears today. I have two names, a name for the life I was supposed to live and a name for the life I stole.

[mssy-lad]

me, 6 months ago: wOaw, boyfriend, look at this! if i stop being able to properly swallow, there's actual doctors that look into that shit! they can scan me and watch me swallow, and help figure out what's up! that's so cool!

my boyfriend: that is cool! there's a specialism for everything!

both of us: as cool as this is, let's hope we never get to meet one

[cut scene to this past few weeks]

me, hydrating: [choking fit]

both of us: oh no

me: babe the spaghetti's trying to go up my nose

both of us: o h no

anyway, guess who's seeing one of the funky cool doctors that specialise in swallowing

[sparrow-prophecy]

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?

I'm in the process of getting my own custom built scooter. It's supposed to have basically an Xbox controller to operate.

[adamslilith]

In July of 2022 I was diagnosed with Multiple Sclerosis and on New Year's eve the same year I ALREADY had my second flare up. On YT I talk about this, the symptoms, the denial.. the treatment, and what this might mean for my future.. here's a sneak peek..

And here's the full video ⬇️

[skybound2]

Hi, I really don’t mean to bother you and I apologize for the intrusion. I was just recently diagnosed with ms and don’t know what the best treatment options are. I’m honestly scared of all of them and was wondering if you have a preference or any advice

Oh my word, it is absolutely NOT a bother or an intrusion!! I’m out here on the internet telling the world at large about my issues, and knowing that someone is listening is so very far from a bother or an intrusion. It honestly helps. I’m just sorry it’s taken me so long to respond. 

I completely understand how you are feeling, it’s a scary time, and it can be daunting trying to figure out what to do and where to start and just remembering how to BREATHE under the weight of all of it can be overwhelming. I’m sorry that you are going through this, but there are some really good resources out there, depending on what your situation is, and where you are located. (I think I about lived on the National MS Society webpage when I was first diagnosed. And I watched SO. MANY. YouTube videos. So many.)

I am happy to give you my experience with the disease modifying therapy that I’m on, but I want to just make sure that I’m clear that 1. I’m not a medical professional, and also, 2. I’ve only ever actually been on ONE therapy, so my experiences are limited in that regard. Okay, now that we’ve got the (probably completely unnecessary disclaimers out of the way), onto the actual response. (It’s LONG so it’s under a cut.)

I have relapse-remitting MS, and the therapy that I am on is Avonex, which is an Interferon beta-1a treatment. I use the auto-injection pen, as opposed to a pre-filled syringe. It’s a once a week intramuscular (IM) injection that I can do at home. This is something that fits my lifestyle better than:

Going to an out-patient center for a once-a month IV infusion

Conducting a Subcutaneous injection three times a week 

Taking a daily oral pill 

I’ve learned that I can trust myself to do a weekly injection by setting a weekly timer for it, and working it into my routine. I schedule my injections for Saturday nights right before bed, and clear my morning on Sundays to deal with side-effects that pop up. I have a pretty packed/sporadic schedule, and I don’t think that I would have much luck keeping to a 3x a week injection routine, or taking a daily pill. And I FOR SURE don’t want to be locked into having to go to a center to get an infusion, even if it’s only once a month.

The actual injection process is pretty easy. You just have to prep your injection site (I use my thighs, alternating legs/locations every week), put the needle on the pen (which is pretty foolproof), place the pen against the injection site location, then depress the button on the pen to insert the needle into the injection site, and wait while the medicine injects itself (I count to 20 to wait it out). The medicine pack comes with everything you need for the injection: alcohol wipes, gauze pads, and bandaids, so you have those at the ready every time. 

I’ve been on it for 3.5 years, and during that time I’ve had one pseudo-exacerbation (caused by my exposing myself to high temps when I knew better) and am now in the middle of my first genuine flare since I started the medicine. To me this SEEMS like a good amount of time to have gone without a full flare, but as I mentioned, I haven’t ever been on any other therapy, so I have no idea if another one would have kept the flares at bay for even longer. 

Another “pro” that I would list for this medicine, probably shouldn’t even NEED to be listed as a pro, but seeing as how I live in the healthcare dystopia that is America, it IS for me, is that while my insurance carrier FOR SOME REASON thinks that I should pay $1000/month for this medicine, the manufacturer of the medicine itself WAIVES that fee for me every month, so I actually don’t have to pay anything for my treatment (beyond my insurance premiums of course). 

Now THAT all said, there are some cons and some caveats. 

So my caveat is that when I started treatment, there weren’t any daily oral pills approved for use. I may have opted to try that FIRST if that had been available at the time, but since they weren’t, I didn’t. And since I had been doing well on my injection treatment when the oral pills became available, neither my doctor nor I thought that it was advisable to switch just because. This is something that could change in short order, as I am currently in the middle of a flare, and while I don’t suspect that my doctor is going to recommend a change of treatment when it’s over, it is possible that he COULD. 

Now onto the cons:

The medicine needs to be kept refrigerated, so you need to plan for that if you travel. Luckily, it’s only a once a week treatment, so unless you are away from home for long periods of time, it’s not too difficult to address. (I own a couple of the same medicine travel coolers that diabetics use for insulin transport, as they work well for this purpose.)

Injection site pain is a thing. It’s not a constant thing, but it DOES crop up every so often. For me it’s typically just a sore muscle in the area of the injection, sometimes with mild bruising. (I’ve always bruised easily, and that’s only gotten worse in recent years.) Sometimes this lingers for long enough that I have to skip injecting one leg for a couple of weeks until it clears up. (Again, I bruise easy, and it's not comfortable injecting into a bruise, so I just don’t.)

What I call “morning after” side effects. The medicine lists “flu-like” symptoms as being possible for ~6 months after starting the treatment while your body adapts. That was 100% a thing for me. I was able to mitigate that a bit by taking ibuprofen (and sometimes benadryl) immediately after giving myself the injection before going to sleep. But the thing that DIDN’T get mentioned a lot was that even after that 6 months is over and the majority of “flu-like” symptoms cleared up, you might still have morning after issues in the form of much milder “flu-like” symptoms. For me, this translates into whole-body aches. TYPICALLY, they are cleared up by around 10 or 11 am the morning after. BUT, sometimes they linger all day as just a general dull-ache feeling. My doctor explained that this is because the weekly injection is a concentrated dose of medicine, and it takes the body some time to process it. And beyond taking pain relievers (which I do) there’s not much to be done. It can be exhausting, and so I TRY to avoid scheduling things on Sunday when possible. I’d say that I deal with all-day lingering aches/fatigue following injection about once a month. Though I’m slow to get going EVERY week following injection. (So 10 am start to my day instead of 8 am.)

Because I haven’t been on any of the other therapies out there, I don’t know how these side-effects compare, so I don’t know if these are better or worse. My doctor seems to think that my reported side-effects are pretty typical for this type of treatment though, and doesn’t think it’s cause to change treatments unless I feel like they are interfering with my life. I’ve adapted well enough to them (and honestly, it’s not a hardship to tell EVERYONE that I can’t commit to doing things at least one day a week :-P)

So that’s my response on my treatment experience. I’d say that the best thing you can do is to find a Neurologist that you trust and that you have a good rapport with, so that they can help guide you through the process and assist you in making changes as necessary.

I wish you all the luck in the world, and please feel free to come chat whenever. I may be slow to respond, but I will RESPOND at some point!! *HUGS*

[thoughtsofawarrior]

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[babamoon]

These guys are busy having a break from the school of mum and dad! Back at it shortly 😅 it’s been an adjustment but we’re getting used to the new routine both working and schooling at home. Although I’ll admit I’m exhausted balancing it with my work and general life/health goings on 🧶👩🏽‍🏫🙈💤 How are you all coping with these big changes? I hope you are all keeping safe and well . . . . . #thoughts #busy #busymom #igers #instagram #instadaily #homeschool #ukmoms #momlife #mumlife #homeschooling #business #businessowner #etsyseller #shop #smallbusiness #wednesday #rrms #mommyproblems #multiplesclerosis #mompreneur #MS #ukmums #garden #mom #mum #covid_19 #school #tired #coronavirus https://www.instagram.com/p/B-J-xQ0Ftfi/?igshid=1j6pypwrw7zys