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Author Topic: Just a general pop in thread  (Read 12129 times)

mare

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Re: Just a general pop in thread
« Reply #120 on: June 30, 2024, 09:26:09 AM »

I saw your post about your update. Congrats! I'm glad that it's up and running.

As far as MS. It's a really complicated disease. I can only really explain the kind I have. There are a ton of variations and not everyone has the same symptoms which is why it's such a bitch to diagnose. I have the most progressive form of the disease (naturally lol) It's called SPMS. Basically, when it hits this stage there are no remissions, you just get progressively worse. My doctor thinks I probably have had it since I was in my early twenties based on my medical history and questionnaire I had to fill out. I was just never officially diagnosed with it. At that point it was in the relapsing/remission stage which is why it wasn't ever diagnosed. I would have symptoms for a while and then it would go away, and I'd feel better. Had I been the type to go to a doctor whenever I felt sick, I most likely would've been diagnosed much earlier and could have maybe prevented going downhill so fast, but I mean, the symptoms for me showed up as migraines, dizziness and achy legs. Things that could be explained away by other factors. By the time it was too hard to ignore, the legions were fairly visible on my brain. It is what it is. There's really not even that much that can be done about it. Most of the medicines on the market are for relapsing MS. There are more severe treatments like chemo even and infusions. The problem is most insurances don't cover a whole lot of those and unless you're rich, you can't afford them. And even those are primarily for people who still go into remission. It's weird. As far as hand controls, I don't know. The cost and relearning how to drive doesn't make much sense for someone like me, who doesn't really work and barely leaves the house. I do also hate driving. A lot. I'm a nervous driver so controlling things with my hands would be too much anxiety for me. Keeping my car is more of a mental thing.

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Writing is something you do alone. Its a profession for introverts who want to tell you a story but don't want to make eye contact while doing it. ~ John Green

RokofAges75

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Re: Just a general pop in thread
« Reply #121 on: June 30, 2024, 11:00:08 PM »

Thanks!  And thanks for explaining more about MS.  It does seem very complicated.  A woman my mom worked with had it, and she must have had the relapsing/remission kind or been in that stage of it because sometimes she would need a cane to walk, and other times you would never even know she had it - she seemed totally fine.  I was hoping your experience may be similar, but I'm sorry to hear that's not the case.  That is really frustrating that the heavy-duty treatments are so expensive and not covered by insurance - I hate our healthcare system.  But it doesn't sound like it would be worth it to pursue that, given the side effects and the fact that there's no guarantee of it working for you.

Same with hand controls for your car - if you don't even like driving, it doesn't seem worth the cost and effort.  I get that; I've always been a nervous driver, too.  I've gotten more confident over the years, but I still prefer to let other people drive if they offer (unless they're a terrible driver).  I can also understand wanting to keep your car anyway, though.  I would probably have a hard time giving mine up, too.
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mare

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Re: Just a general pop in thread
« Reply #122 on: July 01, 2024, 08:38:15 AM »

Yeah, I think it's about independence. At least as long as I have my car, I feel like if I need to go somewhere, I can. Once that's gone, I have to rely totally on my sister or other people to get places. I hate that. It's been the worst part about this whole thing, not really having much independence anymore. I've always been used to being on my own. It's been an adjustment, even living with someone else after all those years being alone. I worked with someone at one of my schools who also had MS and her name was also MaryAnn lol she had the relapsing kind and besides every once and awhile having vision troubles, you'd never even know she had it. She never had an issue with walking ever. For her it was all in her upper body. Vision and hand tremors. So odd.

I watched a video of that couple you sent me. They are adorable and just seem so likeable. Some people just translate to video so well. I feel like I come across with strong serial killer vibes lol He was in a wheelchair so it wouldn't quite be the same thing, but it was still nice just watching a video of their experience.
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RokofAges75

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Re: Just a general pop in thread
« Reply #123 on: July 01, 2024, 01:33:44 PM »

I'm sure that is so hard.  I would also struggle with losing my independence and having to live with someone else again.  I can see how that would be the worst part for you.

I love Cole and Charisma!  I discovered their channel when I was researching for my last story, but now I just watch them for fun.  I've always said they need their own show on TLC!  It would be nice to see some normal, functional couples with healthy relationships to contrast the dysfunction and toxicity of 90 Day Fiance and a lot of their other shows LOL.
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~Julie

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mare

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Re: Just a general pop in thread
« Reply #124 on: July 01, 2024, 01:43:38 PM »

I would totally watch it if they managed to get their own show. I have never watched any of the other ones you've mentioned but yes, it would be nice to see normal people in the spotlight for a change.

I'm back for a second time today to upload my chapter onto AO3. It was funny to see how much people were freaking out about not having access to that site. I guess it makes sense if you normally read a ton of fanfiction. It was actually back by this morning by the time I was finishing up my writing, but I decided to just keep with the plan and update it when the site was supposed to come back.
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Writing is something you do alone. Its a profession for introverts who want to tell you a story but don't want to make eye contact while doing it. ~ John Green
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