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HealthIAmA 22 year old female with rheumatoid arthritis. I was diagnosed at 10 months old. AMA!

Feb 27th 2018 by arthritick • 15 Questions • 57 Points

We're Jessica Chobot and Andrew Bowser, hosts of the Bizarre States podcast. Each week, we dive deep into famous hauntings, UFO encounters, and the downright bizarre. Now we're going even further with a new monthly show Bizarre States: Declassified, airing the last Monday of every month on https://www.projectalpha.com. Each episode will be a longer, in-depth discussion on a single topic (Bigfoot, weird Disney, etc.). To celebrate our first episode airing today, we're here to answer any questions you may have on all things weird and supernatural. We'd love to hear your own spooky stories too. Ask us anything!

EDIT - Hey y'all! We have to get started on filming Nerdist News for today but we'll check back in a bit to answer any remaining questions. Thanks so much, this was super fun!

Proof: https://twitter.com/nerdist/status/966383363358572545

Q:

I feel your pain RA is a horrid condition, one that often gets overlooked or brushed off by people, especially in younger children and young adults. I was diagnosed at 15 after close to a decade of misdiagnosis and incorrect treatment, humira is a wonderful drug especially when taken with methotrexate, unfortunately after nearly 10 years on it it stopped being so effective so I’ve been moved onto tocilizimab, I was just wondering how long you’ve been on the humira and if it was still as effective as when you started it?

A:

Hey guys! Love the show

Two parter, 1 who would be your dream guest (living or dead is fair game)

2 Bowser-centric question, as someone who’s had a somewhat similar beginning to their career as you seem to have had, any career advice for someone looking to get into the creative film/editing/media field?


Q:

I’m sorry to hear that! It’s always frustrating when the body suddenly stops responding to a drug that’s worked so well in the past. Then you have to start all over again.

I’ve actually only been on Humira about 6 months. It seems to work fairly well. I was on Orencia before this, but my insurance company decided they didn’t want to cover that treatment anymore and forced me onto Humira. It feels different than Orencia did, that’s for sure. I’ll feel effects a few hours after the injection, but after about a week, I start seeing inflammation again. My prescription is for injections every two weeks, which isn’t quite cutting it. Not to mention, I’m developing site reactions to the shots. They seem to get worse every time I do them.

How is the Tocilizimab working for you? What do you use for pain?

A:

Start doing your own stuff! You can't wait for someone to hire you, or bring you into what they're doing. You have to make your own stuff. Shoot a TON of videos, even crappy ones, learn the ins and outs of editing and what makes shots work together. Shoot weddings, Bar Mitzvahs, anything that starts you thinking about how to visually tell a story.

-Bowser


Q:

Are you taking methotrexate alongside the humira? I found the two worked best when taken together. I used to have quite bad reactions to my injection sites with cramps, swelling and itching. I got around those issues by leaving the injection out of the fridge to reach near room temp and take in the evening before bed, also I alternated which thigh I would inject and throughly massage afterwards, I don’t know if you’ve tried any of those? I think with most biological treatment it can take upwards of 6-8 months to feel the full benefits, I’ve been on tocilizimab for 4 months now so I’m just starting to feel it properly. Pain wise I just take cocodamol 30/500 as and when I need but if I’m honest I’ve been on them too long so I take far more than I should and way more than is recommended. Other than that it’s just swimming to help with the aching and lots of sleep when it’s all too much Edit: prednisone steroids dramatically help with inflammation but they should only be taken for short courses, maybe you could enquire about those if you haven’t already?

A:

I’m well into the events and that sort of thing, I’ll work on trying to start gathering up a group of creative people to make our own projects; that sounds like a solid place to build on!

Thanks for answering to both of you!


Q:

I’m not on methotrexate with it, no. I reacted too badly to it before that I’m afraid to try it again.

I’ll leave mine out to thaw for an entire day sometimes. I’ve learned that they have to throughly thaw out, and that has definitely helped with the pain of actually injecting it. I do switch thighs every time as well. I was reading online somewhere about people being scared to do it in their thighs, and they always do their stomachs. I’m terrified of injecting myself there for some reason. I also have very little fat there, there’s more on my thighs, but I’m wondering if I would hurt less? I’ve been experimenting with ice packs on the injection site right after I do the shot, and it helps a lot with the swelling, but it’ll still itch very badly.

I’ve done prednisone to calm particularly bad flare-ups. I don’t like using it for mild inflammation that I can usually counteract with NSAIDs. But it really has helped me in a pinch when I have a hard time walking or completing daily tasks.

A:

I don't really have a dream guest...maybe, Dan Aykroyd? -Chobot


Q:

I'm on Simponi now - once a month, subcutaneous. Easiest shot I have ever got.

A:

Hey Jess and Bowser! Long time listener and a huge fan. If you could choose, what would be your top three paranormal hotspots to visit and investigate?


Q:

Just Humira at the moment. I have decent insurance, or so I thought, and I was on Orencia injections for about 4 years, until about 11 months ago, they decided they weren’t covering it anymore and wanted my to try a cheaper alternative.

I had already tried Methotrexate, which is what I was on when I went into remission. Once I came out of it, we tried it again. But I was in middle school, on my way into high school. I started missing too much school with all of the nausea and fatigue it was causing. So, we switched to Enbrel and it worked at first until about 2 months in, I started getting awful site reactions. My leg would get red and swell up, then bruise the next day. That’s when we switched to Orencia infusions. Eventually did injections so I didn’t have to go to the hospital every month. They worked up until I was forced to get off of them. They told me I could try either Enbrel or Humira, as those they would cover. Couldn’t do Enbrel again so now I’m on Humira. It works so much differently than the Orencia did. I’ll feel the effects hours after the injection. So, it’s been working fairly well. I’ve been on it about 6 months. The only issue is that it’s starting to also cause site reactions. Not quite as intense as the Enbrel, but they’re the same type of drug, so I can only imagine it will continue to get worse every injection.

I’ve also been on Tramadol for 4 or 5 years for pain, but I’ve never tried Celebrex.

A:

Jess here - Mine would be: Overlook Hotel in Colorado (which I will be going to this year! YAY!) Salem (even though I know it's super touristy, I want to see it at least once. I can't think of a third...there are so many...


Q:

Do you use nettle products to help? Also, your proof link has trouble loading for me. Can't speak for others!

A:

What are your favorite shows from years past that highlighted or touched upon the paranormal? Mine were Sightings and Unsolved Mysteries.


Q:

Hm. 🤔 I clicked on it from my post and it doesn’t have any issues loading, but I can try uploading again!

I’ve actually never used nettle products. I take a large amount of ibuprofen every day, on top of my weekly Humira injections. I’ve also tried CBD products, but to no avail.

That’s something to look into though, thank you!

A:

YES!!!! I was just watching Unsolved Mysteries re-runs on Lifetime the other day. Also loved watching In Search Of w/ Nimoy. -Chobot


Q:

Did having joints replaced actually help you or help your pain? My fiancee has had RA since she was about your age, and it's honestly debilitating. We struggled to even get a damn diagnosis because too many doctors were like "Sounds like RA, but young people don't get RA. Must be lyme"

A:

Hey Andrew, what was it like working with the great F. Jason Whitaker?


Q:

How old is she? That’s ridiculous. I think I honestly just got lucky getting the doctors I did. My mother is also a nurse, so if someone had told her that, she would’ve known it was bullshit. Young people get RA all the time.

Having my jaw joints replaced decreased my pain in them by 100%. The RA caused my jaw to grow at the wrong angle, and it caused me loads of pain. My jaw would lock up, I wouldn’t be able to turn my neck to either side. It would sometimes get stuck in a position where my head was slightly turned, so I wouldn’t be able to look forward. Was quite embarrassing as a teenager in high school. But since then, all of those symptoms have disappeared. I can open my mouth much wider, eat more easily.

Unfortunately, I can’t replace every joint in my body. Not to mention, I’ll have to have them replaced again in about 10 years. The prosthetics these days don’t last forever. I’m hoping the next time around, they’ll have more durable prosthetics so I don’t have to have them replaced a 3rd time.

A:

F.J. was great! I still want more people to see The Mother of Invention...on HULU now...

-Bowser


Q:

She's 27 now. Her knees fill up with fluid and originally the doctors said that's lyme, we're just going to drain it every time it fills up. Which, it would fill up almost immediately after being drained. Eventually after like a year of that bullshit, she finally got methotrexate. By that point she had to walk with a cane.

A:

Jess, you talked about an old wooden roller coaster in WV that ruined all roller coasters for you. Would that be the Big Dipper at Camden Park? Might also explain your fear of clowns. Camden Park


Q:

I’m so sorry to hear that, that’s awful. I’ve had to had my knees drained quite a few times and it is not pleasant. I hope she has everything as under control as she possibly can now! It’s a difficult diagnosis, and not one most people know much about. I don’t do a great job of describing it when people ask, probably because I don’t like complaining or being perceived as “weak”, but I’ll generally just say “uh, I don’t know. My joints hurt all the time and I’m constantly exhausted.” And they reply with “oh, I know what you mean. My knee acts up all the time.” They don’t really ever grasp what it’s like.

A:

Maybe. I was so little, I honestly don't remember. This would have been in the earl;y to mid 80s though, so if it was around then, then probably. - Chobot


Q:

is your height affected? what is your height?

A:

Is Kyle’s hair really as silky smooth as it looks on camera?

Is Dan as much of a goofball behind the scenes as he is on camera?

When will we get to see more behind-the-scenes footage of mini-Chobot underfoot? (Yes, I know, mini-Chobot has dad’s last name.)

Edit: You should sign your answers to make it clear who is writing which answers.

Double edit: looks like you’ve been editing your responses to do just this, IGNORE ME! (Or ignore my edits anyway, I still want my main questions answered. :-P )


Q:

No, not at all. At least not at this point in my life. I do have slight scoliosis, but I don’t think it’s affected my height much either. I’m 5’5.

A:
  1. No. it's usually pretty snarly because he's going to a "beach" look.
  2. Occasionally.
  3. Not often. I try to keep him out of the office unless I am strapped to get a sitter. -Jess

Q:

How did the enactment of the ACA affect things like your insurance payments and coverage?

Thanks for doing this, good luck with everything!!

A:

Hey Jessica, been a fan of yours since the IGN days.

How would you say your career starting out as a "girl gamer" has made your climb to success easier or harder in general?

It's very clear that you've got hosting chops, but I have to imagine it wasn't always easy to feel like you were getting legitimate chances to show that and were pushed into weird side projects because they wanted a female doing something instead of just a "good host" doing something.

Either way, loved watching you on IGN and now with the Nerdist!


Q:

You know, I don’t actually know. I’m still young enough to be on my parents’ insurance, so I haven’t had to worry about insurance payments. I cover my co-pays, but as far as the actual insurance, I don’t know how it has changed because it isn’t my actual insurance. Plus, I was fairly young when the ACA was enacted.

A:

Actually, the "female gamer" gave me a niche to make me stand out from the average host which is why I think I've been able to sustain a decently long hosting career. And now that I have the experience, it only makes getting hired easier. I've never really been pushed or allowed myself to be pushed into something for the sake of being a "female gamer." I do have to say that it took me a long time to break through from being just considered a "co-host:" rather than an actual "host" because the default in games entertainment is to always have the man take the lead (even though I was often as qualified, if not more qualified, than they were). -Jess


Q:

Have you any advice for other sufferers, such as my ex au pair, who is otherwise pretty young, sociable and physically fit?

Are there places where I can direct her to support without it being depressing/downbeat (I tried to show her a tumblr page, but it was filled with people complaining about it, etc)?

Do you have advice for young adults (ie her) with the condition who like to travel?

How grown up are you? Do your parents help, or are they difficult? (my au pair is reaching 30; I'm around 25 and autistic, but feel more like 22. I live at home, she's currently travelling the world after leaving her flat of many years)

A:

Hey! I haven't heard of your podcast before, but it seems intresting! Have you heard of last podcast on the left? they also sometimes talk about alien stuff, or anything in the supernatural really.


Q:

Honestly, the subreddits r/rheumatoid and r/thritis are pretty helpful. There are so many different people in there, of all ages. I’ve actually made a few RA/autoimmune friends off of Tumblr. It definitely helps to have someone your age to talk to who knows exactly how you’re feeling.

It’s awesome that she’s traveling the world! I wish I was! It’s probably likely she’s already aware of most of the advice I could give her, if she wasn’t just recently diagnosed. It can get difficult to stay in a good mental state when you’re chronically in pain and fatigued. I have had problems with depression, as lots of chronically ill people do.

I think my number one piece of advice (for pain) is to always have a bottle of ibuprofen and a heating pad around. I don’t travel anywhere without either of those. I also make sure I keep my red meat consumption low, because it always causes inflammation for me. And I’m sure she knows this, but you just have to make sure you don’t push yourself too hard. That’s difficult not to do while you’re traveling, since you only have so much time to sight see. But it’s important to know your limits and get enough rest.

If she doesn’t have anyone to talk to, she’s welcome to contact me! I’m always up for new friends, especially if they have RA. You can DM me if you want to give her my info.

As for being grown, I guess I would say I’m fairly grown. I’ve been living on my own for about 3 years now. I’m still very close with my mother, who has been the most supportive and loving person throughout all of my life. She’ll always offer advice and encouragement when I need it. I pay for my medical bills and handle my care, but I’m still on my father’s insurance.

A:

I have heard of it although I haven't listened to it yet. Thanks for the rec! - Chobot


Q:

I'm in my mid 20's and I've been having quite a bit of trouble with my joints lately... painful TMD in both jaw joints (which recently stopped clicking apparently due to cartilage filling the gap, probably not a good thing), chronic wrist/knuckle pain and endless wrist/knuckle cracking (but I'm a programmer so...) and weakness... bad ankles (but also flat-footed...), overall lethargy (but I've had depression since I was 8...), back and shoulders occasionally become completely useless (but I'm a programmer so my posture must suck...)

What I'm getting at, is how do I separate out other potential causes when asking about the potential for RA? I'm worried that my chronic pain conditions are becoming increasingly common and spreading to other areas, but since I'm young I'm doubtful any doctor will suggest there could be a common cause. Of course, it's possible it's just a conundrum of isolated cases all getting worse simultaneously...

Any advice?

A:

have either of you been some place that spooked you out so bad you'd refuse to ever go back?


Q:

Track your symptoms. Write stuff down and document when the pain occurs, you may be able to pinpoint if there’s a cause aside from disease. It’s always good to have something written down to bring with you to a doctor as well.

It could be RA, or it could be something else entirely. It’s hard to diagnose symptoms like that. That doesn’t mean that your pain/discomfort is unimportant though. If you’re truly convinced that it’s not just overuse/bad posture/depression, and that there may be an underlying condition, be adamant with your doctor. Insist that you know your body and that they should run tests. If I hadn’t had my mother (a nurse), I don’t know if I would have been diagnosed so early on. And we also got lucky with the doctors I was referred to, who diagnosed me.

A:

Not yet - but I've heard the Hinsdale House in NY has that effect on people!

-Bowser


Q:

I'm very naive to this so I'm very sorry I offend or sound simply stupid.. but how are some of the ways your condition affects your daily activities?

A:

That being said,are you guys ever afraid if having something follow you home from one of these haunted sites?


Q:

Most noticeably, I’d say walking, as well as anything that requires use of my hands. I can rarely open sodas or jars. If I sit still in one position for too long, I’ll have to physically move my joint (usually knees, wrists and elbows) back into place because having them bent causes so much stiffness, that if I try to move them too quickly, the pain is about a 7/10. If I walk longer than, say, 10 minutes at a time, within an hour or two, my knees, ankles and hips will swell up. Another big one is just not having much energy to do anything. The pain affects my sleep, unless I take something that knocks me out. I slept 8 hours on and off last night, then had to take a 5 hour nap during the day because I couldn’t keep my eyes open.

It’s an interesting disease though. Some days, I don’t have any problems at all. There are days when I can go on a 3 hour hike and feel fine during it (it’s usually the day after where I run into problems). Other days, I might need a wheelchair or scooter if I want to leave the house.

A:

Nothing yet! - Jess


Q:

I work at a university with a master's degree and I mainly do cancer epidemiology. My average day mainly involves working with a large database of patient characteristics and disease information (e.g. age, diagnostic tests received, medications used, tumor type, date of recurrence, etc). The main skills that are required are basic statistics and computer programming that I learned in the first year of my master's program. When I'm not working with the database, I'm usually writing to share the results of what our study finds. I write reports and create graphics which I share with other researchers involved in the study, and I also help write medical journal articles which we try to publish. My average week also involves a lot of in-person or phone meetings with the doctors and professors who run the study that I work on or with other staff from collaborating research centers. I sometimes get to give presentations to students or other medical researchers to talk about what our findings are. I work in a normal office type of setting, and when I'm having a flare up I can easily work from home from my computer. The nice thing is that everyone is pretty understanding since they all work in the medical field, and I have access to great medical care at the university itself. I work with a database of information that has already been collected, but many epidemiologists also design questionnaires and organize the collection of biological samples when studies are first starting up. I work in a more academic setting, but there are plenty of jobs in government or at pharmaceutical companies, for example. Hope this helps.

A:

Are you concerned that since Chris took the id10t podcast away from Nerdist, it will have an effect on your listenership?

Also, what was that thing that always almost chased me out of my Grandma's basement?


Q:

P.S. I also live in Oklahoma!

A:
  1. Nope! Chris' podcast has nothing to do with ours.
  2. Probably a goblin. ;) -Jess

Q:

What supernatural ability would you like to have?

A:

MIND CONTROL (all day/every day)!!! -Chobot


Q:

Jess- your Morticia Adams was badass. Please tell me that has the potential to go somewhere.

Bowser- do you still have people approach you thinking your characters are real, or do people pretty much know those are gags by now?

Bizarre States- love the podcast. I've been meaning to email in my ghost story but Jess mentioned your inbox has so many to choose from I never sat down and took the time to write. Maybe I should?

A:

Yes! I get hate mail often from people thinking Onyx is real, and hating him. Which makes me sad, he's so likable! Right?

-Bowser


Q:

Who has been the most interesting guest in your book so far, and who are some dream guests you would love to have on the podcast?

A:

I LOVED having Josh Gates on. I wish I could have been here Ted Raimi (Bowser pulled that one together)! - Chobot