Brianne talks to Felisha about multiple sclerosis, comfortable clothing, and leisurely tricycle rides.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Today I’m talking to Felisha about multiple sclerosis and comfortable clothes and leisurely tricycle rides. I wish I could say that I did this on purpose, but this episode is conveniently coming out during MS Awareness month. We also recorded this before the Oscars, so we don’t talk at all about Selma Blair’s incredible red carpet cane. This is incidental.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
Brianne: Hello! And how was your health as a kid?
Felisha: So I’ve been thinking back a lot on this listening to the podcast already, expecting this question. But my health as a kid was okay. But I did have a couple of blips of illness kind of. I think it was second or third grade I had chronic strep throat, I was always out sick with it. And it turned out that one of my friends that I was always hanging out with, playing with, probably sharing food and stuff with, had strep throat but she didn’t present any of the symptoms so she was like a carrier for it but never got sick. So that’s why I was constantly getting sick. And finally my doctor, my pediatrician told my mom, “Maybe you should have some of her friends tested because she’s always getting this, like every month.” And so that cleared up and obviously on antibiotics the whole time. All that wonderful stuff. But she got antibiotics, it cleared up, and then I wasn’t really sick again besides normal colds and flus when you’re a kid. And then things kind of didn’t get bad again until I was in college and I got mono.
Brianne: Mono is always a good one!
Felisha: Everyone’s favorite. It seems like that’s a pretty common thread in a lot of these stories is mono.
Brianne: It’s like a disruptor or something. I don’t know.
Felisha: It’s like it triggers everything or something. I don’t know. So I got mono and then after that I got chronic tonsillitis. I would get that every four months and stuff and my tonsils would swell up so much that they would touch each other. New Speaker: Oh yeah, that’s a good one.
Felisha: Yeah, it was awful. And so it madeswallowing, eating, breathing like impossible. So finally I was able to get to a doctor that was like, “Okay, I’ll just go ahead and refer you to an ENT.” Because my primary doctor was like, “Well, I would like to see this many cases in this much time before I get your tonsils removed.” Because people don’t like to do it as much anymore. And finally I saw a different doctor that was on call and he’s like, “No, I’ll just give you a referral to that.” Got my tonsils taken out and I stopped getting ill all the time, which was great because I was in college and I was missing a lot of class. New Speaker: Yeah, which is really hard.
Felisha: It was really hard. And I would just be out, like I couldn’t go to class. I was so tired. And it would be triggered by something like a cold or something simple would turn into this huge infection that couldn’t really be cured up antibiotics or anything.
Brianne: And it’s not always… because it can be viral too. And that’s a whole thing. But it’s like your immune system isn’t bouncing back the way other people seem to. Yeah.
Felisha: So then that cleared up and then again went back to normal colds and flus. And then probably when my chronic illness journey I guess really started was about, I think it was 2013. So I graduated college, I graduated in 2009, got a job, and was still working at the same place. I still work there now. And I was working crazy hours, like 16-hour days sometimes, on my feet, and it would be overnight, like swing shifts. So from afternoon to middle of the night. And I was, it was awful. I can’t believe I did that sometimes. But I was like, “This is what I’ve got to do. I graduated from school, this is a good job opportunity. I’ve got to work my way up. Not everybody’s job is just going to be nine to five.”
Brianne: Right. And also being young, like you can do it in your 20s, because that’s the time when your body can take the abuse. Right.
Felisha: Exactly. And I started having these weird symptoms come up, like my legs would tingle and would feel kind of numb. And I was like, “Oh that’s probably just because I’m standing so much.” Because most of my job was standing. And I’d be super tired. But everyone I was working with was crazy tired because we never slept, you know. So I was like “This is just because I’m working so much.” I didn’t really think about it. And then one day I got out of the shower and I was drying my legs off and I couldn’t feel the towel against my legs. And I was like, “Hmm, maybe I should go to the doctor for this.” Because it was just sudden, it was just one leg and then a couple of days later it was the second leg. It was just like…
Brianne: Was it a constant or was it kind of intermittent? Like you were aware of it in that moment, but could you feel it other times, you know?
Felisha: Yeah. So it kind of came and went, the tingling was very intermittent. It didn’t matter if I had just woken up and walked to the bathroom, my legs would tingle or if I had stood all day, they would tingle. It was kind of all the time, but also random when it would happen.
Brianne: Yeah. Like hard to track, which I think is one of the things that’s so frustrating.
Felisha: Very hard to track. Yeah. And the numbness, that was a little bit more onset, but it had kind of gone away. But it kind of hadn’t. So I eventually had gone to the doctor and was like, “Hey, I’m having these problems with my legs.” I think I told my boss about them and she was like, “You need to get that checked out because if it’s work related it needs to be taken care of or whatever.” And so I went to the doctor and he said, “Well, it could be diabetes, it could be a B12 deficiency. So we’ll run some blood tests.” Because I have a family history of diabetes and I guess that neuropathy is one of the symptoms of it. So I got blood work done and it all came back fine. I went back to the doctor and he said, “Well, I can send you to a neurologist and you can do a nerve conduction study and see what that shows.” So I went to a local neurologist and we did the nerve conduction study, made an appointment with her to explain it all. And she was like, “Well, you just have neuropathy.” I was like, “Well, I already know that. That’s why I’m here.” So she was not helpful at all.
Brianne: She was like “ideopathic neuropathy.”
Brianne: “Just happening.”
Felisha: “It’s just happening. Your reflexes are a little bit heightened, but that’s about it.” I was like, “Why did I spend like $1,500 to have this done for you to tell me what I already knew?” New Speaker: Right. Yes. Fair complaint.
Felisha: Yeah. And then I went back to my primary doctor and we discussed options and he’s like, “You know, if it’s kind of going away…” Because at this time I had started doing massage therapy and acupuncture to help and it seemed to be helping. So he was like, “If this is helping you, we could spend a ton of money on a bunch of different tests and it still could come back as nothing.” I was like, “Well, I don’t want to do that.” So I just kind of left it and probably went on about two years on and off.
Brianne: Okay. And during that time, did anything new happen? I feel like this is what you were just starting to say anyway. So you can just answer.
Felisha: During that time I had a whole slew of weird things happen and I never connected any of them. Like I had a period where I would kind of choke when I was swallowing, but it was just kind of like when you swallow wrong and you’re like [gags]. But it’d be like on my own spit and I’d be like, “Well that’s weird.” And then it stopped. You know?
Brianne: Like it’s sort of familiar and could happen to anybody but the circumstances of it were like… more.
Felisha: Right. It usually wasn’t when I was eating or drinking something, just kind of sitting somewhere and it would happen. Or like a leg would twitch out of nowhere. I was like, “Well, that happens.” I had double vision for a little while in my left eye and I thought it was because I hadn’t gotten my eyes checked in a while and I needed a new prescription. So I got a new prescription and in a couple of weeks of wearing my new glasses, it went away. Maybe it was the new prescription. And the eye doctor had told me, if it gets worse, go to an ophthalmologist. But he took a picture of the back of my eyeball. Everything seemed fine, the nerves looked okay, so he wasn’t really concerned. And it went away. So then I wasn’t concerned about it. And then let’s see, 2015 October, I went on a work trip to Wisconsin and it was a long trip. I was doing training so I could bring the training back to my location and implement it. And it was long days of travel. I didn’t get back until early Sunday morning, like late Saturday night. And then I had to go back to work on Tuesday. So it really wasn’t a lot of time to recover from that really long work week in a different state.
Brianne: And out of your normal routine.
Felisha: Yeah. And my boss really needed me to start this training. And so I was like, “Okay, I’ll just take my extra days off later once it’s done.” And I really started to have problems walking at that point. Sort of like at the end of the day, or if I got too hot, my left leg just wouldn’t work. It was like, it was muscle weakness, but at the time I didn’t know I would just go to take a step and my body would just kind of lower…
Brianne: Like sink into it.
Felisha: Like sinking into it. And it was like, “Well that’s strange.” But it would go away like everything else.
Brianne: It wasn’t every step, all the time to notice.
Felisha: Yeah, definitely. I would sit for five minutes and it would be fine. But this time I would sit and it wouldn’t be fine. And by the end of that work week, back at work, I was hardly able to walk. And so I called in to work. I was like, “I can’t come in today. There’s something…” I made up some excuse of like sciatica in my hip. New Speaker: Yeah, something that you can name.
Felisha: Something that I could name that was tangible that didn’t make it seem like I was calling out and being flaky. Because I’m pretty sure it was a Saturday and Saturdays are pretty brutal as far as needing everybody there. And so for me to call out on a Saturday, it had to sound like a really big deal. Not this weird, “My leg’s not working, but it doesn’t hurt. I have no idea what’s going on.” I made an appointment on Monday to go to my doctor and he checked me out and he was like, “Well this is strange and you’re not in any pain. So I’ll write you off work for two weeks while we do some testing and investigating and see what’s going on.” And he referred me for an MRI of my lower back. The insurance company didn’t want an MRI on my lower back. They didn’t think it sounded like that’s what it was, but they wanted imaging of my brain.
Brianne: The insurance company did?
Felisha: The insurance company did. Looking back, I’m like, “How was my insurance company smarter than my doctor to think of that?” Because I guess I should have prefaced this before. My mom has MS as well. So there’s a family history there and I always presented that, but there’s not that much of a family link of MS, so people didn’t really take it seriously. As like: this is a family history. I’m clearly presenting with neurological issues. Nobody really put two and two together at that point. New Speaker: Lots of things to look at it in hindsight, right?
Felisha: Right. I was like, “Maybe we could have thought about that as an option?” So I got the imaging done on my brain. Then he referred me to a neurologist that was about like 20 minutes away and I’d never heard from that office. And I was getting worried because I was progressively getting worse. I couldn’t move my leg as much, couldn’t wiggle my toes, it was getting really hard just to walk around the house. My grandma lends me her walker and I should have been like, “Okay, I can’t walk. I need to make this an emergency.” But I was just like, “Well I’m not in any pain and the doctors know what they’re doing. I’ll just follow what they’re doing.” I had never had any major health issues before so I was not aware that doctors don’t know what they’re doing a lot of the time when it comes to this kind of stuff.
Felisha: Yeah, so the neurologist that I was supposed to go to was on vacation until the end of next month. I was like, “I don’t have time for that. At least I know that I can’t wait that long.”
Brianne: And your time off work was probably about to end or ending.
Felisha: It was getting towards the end of the two weeks. My mom was finally like, “I’m taking you to the emergency room and we’re going to find out what this is.” Because it was just getting so much worse. We had gotten the report back of my brain imaging and it said a whole bunch of words that I don’t remember, medical jargon, but it was a lot of lesions in this area and this area and this area, and this area. So I think that probably concerned her. It definitely freaked me out because I’m like, “What the heck are lesions?”
Brianne: Yeah, it’s a scary word!
Felisha: And nobody had explained it to us yet at this point. So we went to the emergency room, they triaged me, they pulled me back into like the pre-ER section to get an IV started and all that stuff. And they’re like, “Yeah, we’re definitely going to admit you to the emergency room.” Got to the emergency room. They’re like, “Yeah, there’s definitely something wrong. This looks like classic multiple sclerosis. We’re going to do some more imaging, testing and start you on IV steroids to try and calm this inflammation that’s going down.” Which is a pretty common treatment for when people are in a flare. So they did the lumbar puncture, which I was terrified of having that done and it really wasn’t that bad because they gave me morphine through my IV. So when I sat up I was like, “Okay, this is fine. We can do it.”
Brianne: Yeah. “Go ahead. Stick it in there.”
Felisha: “Go ahead. Stick the needle in my back. I can’t walk anyway, so I’m not running out of here.” They admitted me, they started the IV and got more imaging done and they’re like, “Yeah, this looks a lot like multiple sclerosis.” And I was just kind of like, “Okay…” Like I grew up with my mom having it and she lives a pretty normal life. Like she works, she walks, she runs all the errands, you wouldn’t know that something’s wrong with her just by looking at her. I was like, “Okay, this is just what’s happening, but I’ll get back to normal life.” And they decided to transfer me to UCSF, which is the University California hospital over here in San Francisco. And they were like, “They have a really great MS team. We want you to go over there, maybe get some more treatment and then you would go to physical rehab facility.” So I went to UCSF and had a procedure done called plasma phoresis. And it’s where they put a catheter into your neck, into your vein that’s here. And it’s basically kind of like a dialysis where they take your blood out and they spin it and then they replace it. So what they’re trying to do is take out the inflammatory antibodies in your blood system. And then replacing it with a blood product substitute to try and calm everything down. I think because I had waited so long to get the steroid treatment to begin with, my body was just like on fire basically with this. So they were trying, they did the five days of the IV solu-medrol, didn’t really do anything as far as my symptoms. I did five days of plasma phoresis. Kind of didn’t really do anything, but they also told me sometimes it takes a few months to kind of see anything. It’s like, “Well that’s not what I’m looking for. But I guess you guys are the experts over here, so, okay.” And then I went to a physical rehabilitation hospital for four weeks. So all together I was in the hospital for six weeks.
Brianne: That’s a long time.
Felisha: That is a very long time to just sort of think you’re going to the emergency room for something. Emergency room stories are usually sit there for 20 hours and you get released and to then not come home for six weeks… It was crazy.
Brianne: That would be really jarring and I’m sure counter… You’re like, “I’m going to go here and then I’ll go to work on Monday or on whatever day.” And that’s not what happened.
Felisha: That’s not what happened at all.
Brianne: That would be a lot to process too because I’m sure you have a lot of downtime while you’re there, but you’re not actually… Like you’re still there so it’s not good downtime maybe.
Felisha: No, definitely, I would not call that good downtime. And it was when I was at the physical rehab place that it sort of sunk in. Like this is going to be something real, not something I’m going to bounce back from. You know, you see all the videos on Facebook of people who are like in these epic car crashes and next year they’re like running a marathon.
Brianne: Yeah, inspiration porn.
Felisha: Yeah. So I’m thinking I’m going to go to rehab. I’m going to get better. I’m going to be back at work by the beginning of the year. That is not how it happened. [laughs] That’s not what happened at all. And that’s when it really sunk in that this is serious. Your body’s not just going to bounce back like that. I was so weak from laying in a hospital bed for two weeks prior to going to the physical rehab hospital that it was just like… I don’t even know who I was while I was in that place. And I was like a good two hours from home. So that was really hard.
Brianne: It’s even more isolating.
Felisha: It was, it was really difficult and it took me a long time to kind of work through all of that. There’s so much that goes on for you to process. And I’m thinking I’m going to retrain how to walk in four weeks and be good to go. And they’re there training me how to use a wheelchair. And that connection didn’t happen maybe for like two weeks.
Brianne: Right. That that’s what was going on.
Felisha: That’s what was going to be my new reality.
Brianne: Right. Well, and that would be so fast it sounds like, from really not having difficulty with mobility and them telling you, or not telling you, but them expecting that your mobility might not recover. Or like that they don’t expect it to.
Felisha: They expected it to recover, but not 100%. And they weren’t able to obviously tell me what that was going to look like. So, I came home from the hospital like two days before Thanksgiving and my left leg still wouldn’t move on its own. I had to pick it up and all this stuff. And it was maybe the day after Thanksgiving my legs started to move again. But it was very floppy, it wasn’t controlled at all. And I remember thinking I would have been more ecstatic about it, but it was still so not controlled that I was like, “Okay, this is going to be a lot longer than I think it’s going to be.” And then since then it’s just been a journey of physical therapy, different physical therapy places because they don’t know necessarily how to treat neurological conditions. Most places are used to sports injuries where you get better and move on.
Brianne: Right, like that’s their target or that’s their standard of care kind of.
Felisha: And that’s not the case with a neurological condition like mine. But that physical activity and learning how to strengthen your body, all that sort of stuff is so important to be able to go to that. So it was a bit of a struggle to find a place that would care for me how I needed them to. Especially in the area that I live in. Anything that’s specialized like that is a good two hours away.
Brianne: Right. That would be not very accessible obviously.
Felisha: No. And with me not being able to ride in cars very well. It was at a point where you sit and your legs are like here, but mine, I couldn’t even hold them up. They would just kind of fall to the side. Like I was so weak, you know, I couldn’t even hold my legs like sitting up and I didn’t even think that was a thing that your body needed to have certain strength to do. You know?
Brianne: Right. You didn’t realize you were using your muscles to do that kind of. Yeah.
Felisha: Yeah. And eventually that came back and movement of my toes came back. But it was so slow, and so painful because with that came a lot of muscle spasticity. Because now the nerves are just firing when they want to because they’re not getting the signals correctly and it’s just… I still deal with a lot of spasticity but it’s nowhere near as bad as it used to be. Like it used to just throw me back or throw me forward when I tried to move at all. And it doesn’t do that at all anymore. But sometimes it’ll still tense up and I’ll freeze up for a second or two.
Brianne: Yeah. And something that I would imagine is it’s like once you have been to a certain level, so you know what that kind of a flare can be like, as soon as you start to see any warning signs… For me, one of the things is the fear, so I don’t have the same type of issue, but it’s like, “Oh shit. If this is happening, this can lead to this can lead to this.” And it takes a lot of mental energy to pull yourself out of that cycle. Even if it was just one tiny thing and everything felt fine afterwards.
Felisha: Yeah. I definitely had a fear for a long time that I was just going to be in and out of the hospital all the time. I was like, “Is this my life now? Am I just every year going to end up in the hospital at random and experience this all the time?” Like, that’s what I thought. And then I started on a medication that helps with the progression of MS. It kind of tries to stop it. And through being on that and like, “Okay, this actually isn’t going to happen.” And I’m a lot more educated now to see warning signs, being like, “Okay, this is something new. I should probably contact my doctor or this is an old symptom that I had a weird flare up for the day and it’s fine now.”
Brianne: And probably like rest, too. Even just knowing like, “Oh, if this is happening I have to rest even if it’s not convenient.” Which is hugely difficult.
Felisha: Yeah. I’ve had to make my life so much different now because I do take a muscle relaxer to help with the spasticity. But of course the side effects of muscle relaxers is that they make you drowsy. So I have a scheduled nap time every day of when I have to take my medication. But if I don’t take it, it’s the only thing that helps any pain in my body. Like any narcotics, advil, that’s laughable. It doesn’t, it’s different pain. So it’s like, “Okay, this is how I’m managing the pain that I’m in from these muscles always been so tight. This is just what I have to do now.” So I have this window from two to five that I can’t schedule anything and that makes it very hard because that’s when life is happening for people. But I’ve got my family kind of trained on it. Like I have to be able to take my medication at this time and it’s going to make me drowsy and I need to take a nap. That’s just how it’s going to be, you know.
Brianne: This is nap time, period.
Felisha: And it’s also kind of a rest time. If I’ve had a long morning or I’m not feeling well, it’s like at least I get to go lay down at the scheduled time that everyone is sort of aware of. I don’t have to cancel on things because I’m too tired, I just have it built in at this point.
Brianne: Which I’m sure, that part at least sounds very wise to know that you need to schedule your rest time. And then, okay, I think you mentioned this, but what happened with work even after that initial hospital admission?
Felisha: So they let me go out on short-term disability, which eventually turned into long-term disability, which eventually turned into, “Well we can’t keep your job open so we’re going to have to let you go.” I was like, “No!” My insurance is through there. I didn’t have social security or anything, so I kind of fought back and they created a part-time position for me. It was not doing anything that I was doing before because I was a supervisor before, but I was sort of doing backend paperwork, computer stuff that people didn’t have time for that I knew how to do because I had this history and knowledge of how everything works so I could do that sort of work for them. So I still work part time and it’s a flexible 24 hours a week. I go in maybe four hours a week and the rest of it’s from home so I can work it around my different appointments. Different doctor’s appointments. If I’m feeling well or not feeling well, I can work it around that which is, I’m so thankful for. So many people… I know you’ve talked about this before, of trying to be like, “I can be a productive person but I can’t come into work and I need to have these flexible hours because I don’t know when I’m going to feel well.” And I have that which is like this rare gold gem in the chronic illness community it seems like. And it’s only because I had worked at the company for, since I graduated from college in 2009 and they were like, “Well, you’re still a valuable asset to us so we’re willing to do this for you.”
Brianne: And you have a ton of institutional knowledge it sounds like, so you can kind of have a role built for you. So that is good. Flexibility… yes. And so it’s part time, but that also still came with insurance?
Felisha: It still came with insurance.
Brianne: Yeah. Insurance is one of the many things that I am so interested in and… Yeah.
Felisha: [Sighs] Well there was a point they had sent out an email in like November that said, “If you’re a part-time employee we will be canceling your insurance.” I was like, “What? Noooooo!” And I freaked out and I made an appointment with the HR person. She was like, “Okay, well we mean going forward part-time employees won’t be eligible for benefits. There’s a few people across the network that are in your situation for various reasons whether it’s childcare or whatever, so we’re going to be grandfathering you guys your insurance.” I was like, “Oh my god.” I lost so much sleep for that whole week before I could talk to her and I was also again listening to your podcast at that time and hearing people talk about how there’s this role and we’re told to be productive members of society you have to work and you have to work a lot. And it’s like I’m well enough to work part time, but how am I going to market myself to a company when I have such a specialized education in what I know how to do? How the heck am I going to find another job that’s going to give me benefits at part time. My mom was like, “Well, maybe you could work at Starbucks?” I was like, “I know they give their part-time employees benefits and stuff. How am I going to work at Starbucks doing all this crazy stuff?”
Brianne: And standing all day probably. I feel like, I guess I don’t know what their accommodation policies are like, but their workplace doesn’t look accessible.
Felisha: No, I agree. I don’t know anything about Starbucks employment. They might have tried something if they really wanted to hire me. Like, I could be a greeter, like a Walmart greeter, but for Starbucks. Like, “Welcome to Starbucks!” But I was like, “I don’t think that’s going to work.” But luckily we didn’t have to worry about any of it.
Brianne: Yeah, that’s so fortunate.
Felisha: I get supplemental income from my private long-term disability, being part time, but if I had went full time, they would consider me not disabled anymore and my policy, if I ever went out because of MS reasons again, it would be considered a preexisting condition and I wouldn’t qualify for the policy. It’s like, just because I go back to work doesn’t mean I’m not disabled anymore with my MS. Like that’s always going to be a disability, and I think that’s a flawed area. Obviously.
Brianne: And like, across the board because that’s something that’s come up a few times with people that I’ve talked to here and people that I’ve talked to online and stuff just in general about the way even public disability works. So I know California’s short term I think is easier to qualify for, but obviously is short term, but with long-term disability, most places, part of it is the income cap. So it’s kind of like what you’re saying about part time versus full time, but it’s like, “Wool, well you qualify for disability, which must mean that you can’t work. And so if you find a way to accommodate your own disability and make money…”
Felisha: Make enough money.
Brianne: Yeah, like one month, then you’re not eligible for this program at all anymore.
Felisha: Yeah, it’s… It’s really shit.
Brianne: Yeah, way to disincentivize people from finding ways to take care of themselves, like it just doesn’t make sense to me.
Felisha: No, it doesn’t. In California, you can go on disability for a full year on state disability, which is a pretty long time for most people. So that was good. At least during that time I had the state disability when I was off work full time and it was basically, it covered what my take home portion was. So I wasn’t really in the deficit or making way less. It’s not like unemployment, it’s more based on what you were making before. So I did have that during all of this, which is very fortunate as well.
Brianne: Yeah. It’s a real mess, I think.
Felisha: It is. And work requirements that they’re trying to put in for Medicaid and stuff like that. People are on Medicaid because they can’t work and now you’re going to try and put work requirements on some of this stuff?
Brianne: And with conditions that flare with stress often. So you’re possibly more likely to need treatment if you do that. Yeah, it’s… [laughs]
Felisha: Yeah, it’s like… who’s coming up with this and who are they speaking to with what disabilities that this works for?
Brianne: Yeah, there was… maybe you saw this, somebody who is on Twitter who, I want to say it’s this guy and he’s Deaf. And so he tweets about disability a lot and that is fine. But then something that he tweeted was like, “Every job could be done by a disabled person.” And he was like, “I dare you. Or like I challenge you to name a job that a disabled person couldn’t do.” And I’m sure that’s not the exact phrasing, but his point was that every job can be done by somebody with a disability, which I totally agree with, but not everybody with a disability is able to work within the structure that we have now. And he was like totally overlooking that. So I feel like it’s somebody like that who’s like… and he deleted his original tweet because he got a lot of pushback and heard it and was like, “Okay, yes, I see what you guys are saying.”
Felisha: Well and it’s like, what are you considering a disability at that point too? I think being deaf is a totally different category of disability than not being able to stand or something like that. Like that just puts different limitations on what you can do.
Brianne: And within disability there’s a lot of just like… When it’s something that is intermittent versus when it’s something that’s permanent. Because when it’s something that’s permanent, your accommodations are also consistent versus when you have something intermittent and you’re like… I’ve talked to a couple people where this has come up too, and they’re like, “Well, I’ve gotten criticism because someone will see me out in the world doing something. And then they’ll be like, ‘well, you must not be that sick.'” And you’re like, “Well no, I am that sick, but I don’t present as that sick every day.” And it’s like, you know, the kind of horror stories that you hear about people trying to prove that people aren’t really disabled when it comes to disability claims and stuff. Like if you have a wheelchair that you use, but sometimes you don’t need it… Like many people who have wheelchairs that they sometimes use.
Brianne: It’s so real. Okay. A different question that I have… Are we mostly caught up to the present and kind of going through the timeline?
Felisha: Yeah, I think so.
Brianne: Yeah. Okay. A different question that I have then is, so you mentioned that before you knew what was going on that you found massage and acupuncture to be helpful. And so I was wondering what other kinds of stuff have you tried? Whether it’s pretty, like those are both standard alternative stuff, or weird alternative stuff or diet or whatever. Like what have you tried? Has anything been helpful? Has anything been absurd? You know.
Felisha: I have kind of tried everything, it seems like, on some level at this point. The biggest thing I think is the disease modifying therapy drug that I’m on, that’s helped tremendously. But it doesn’t help necessarily with my day-to-day symptoms. It just stops the progression of MS, which is huge! But it doesn’t help me in my day to day. So I still go for acupuncture and cupping, which is so helpful. Like a few days afterwards I will wake up and not be in any pain. It’s just like, “What is this life? Is this what a normal person feels like? I don’t even remember that anymore.” But it eventually wears off and I can’t go every day because that’s expensive or even once a week because that gets costly. I did ramp it up for a short amount of time where I was going every two weeks because I felt like it would help, but then I would go too long without going in and it would just kind of… I would backslide to where I was before. So now I go about every three weeks and that seems to be a good medium spot for me.
Brianne: Like maintainable? That’s cool.
Felisha: So that does help. And I thought acupuncture and that kind of stuff was just like not anything to take seriously. But my grandma actually started doing it because she was having issues with her back and she went from being pushed around in a transport chair and I’d have to take her everywhere to driving herself again. So I was like, “Well maybe there’s something to this. Maybe there’s not. And who knows? I’ll try. If it doesn’t work, I don’t have to keep going.” But I did give it a good six-session try to see if it would work and it did. So I was like, “Okay, well if this is what’s helping me, I’m going to do it.” And eventually I got back to going in and it has helped, it seems like. I do yoga, the “have you tried yoga yet?” [laughs]
Brianne: Well yoga is super helpful for people.
Felisha: It is, and it’s like you roll your eyes at the idea that this exercise is going to make you feel better and it’s going to change your life and all this stuff. But it kind of does in a weird way.
Brianne: Yeah. You have to be in your body and that can be great.
Felisha: And the breathing and the meditation that goes along with it is so useful in anything besides just when you’re doing your yoga class. So I still do that. I practice at home with youtube videos. I go to a studio. For quite a while, a friend was coming to my house and doing private classes with me. That’s not happening anymore. But that was really helpful to kind of get into it.
Brianne: Yeah, and to have somebody like adjusting your posture and stuff.
Felisha: And it was a friend who also has MS that was teaching me. So she really got it, what I could do and what I couldn’t do.
Brianne: Yeah, that would be helpful.
Felisha: Let’s see, what else do I do? I exercise using an adult tricycle, which has been like hugely freeing and something I didn’t realize that I needed. Because I’m able to pedal and all that kind of stuff and I can stand up to hop on the bike. So my parents and my boyfriend bought me one for my birthday this year and I was just like, “I’m free! I can go and do whatever I want!” Not really, but it feels like it’s.
Brianne: That sounds great though!
Felisha: It’s great. And the big thing that it was for me is I live next to a bike trail. And when I first came home from the hospital my dad used to push me down the bike trail and at the end of it there’s a frozen yogurt shop and we’d get frozen yogurt and we’d go back. And never in like a thousand years did I think, “I’m going to be riding a bicycle down this trail.” It just never even crossed my mind because I just didn’t even think that was a possibility.
Brianne: Right. Like, you had ruled that out for you.
Felisha: Yeah, I just didn’t think about it. Like, how am I going to balance on a bicycle? But I don’t have to because this one has three wheels.
Brianne: Yeah. It takes that one thing out of the equation, which is perfect.
Felisha: And when I’m riding it, I get to look like a normal person. Because I’m always the girl in a wheelchair, or the girl with a walker, with some kind of mobility aid, like “what happened to her?” And when I’m on the bike, I’m just the girl on a bike. And that was something that I didn’t even think would be a positive effect from getting a bicycle.
Brianne: Yeah. Yeah. And that, the whole mental side of using mobility aids… Someone, I actually talked to someone this morning, I had a really packed day after my sick day [Felisha laughs]. But she had kind of mentioned that she’s needed to use a wheelchair before, but when she doesn’t need the wheelchair, she’s like, “I’m having trouble adjusting to using crutches or a cane because I still find myself resistant to being that person.” And we can talk about internalized ableism all we want, but when it’s your own life, it’s a real feeling to be like, you know, it takes energy to decide not to care or it takes energy to notice that everybody is looking at you or whatever’s happened.
Felisha: Yeah. Like I can go in the wheelchair and it’s… For me, other people stare at me, but it’s obvious that something is wrong. But I’m 31 but I look 20 and if I go out with a walker, it’s like, “Oh, what’s wrong with her? She looks like a child. And why is she using this mobility aid that 80-year-old people have to use?” New Speaker: And especially walkers, we associate.
Felisha: You don’t see young people using a walker or a cane. Wheelchairs are maybe a little more common, but definitely not those other aids. And that’s definitely been a mental hurdle to try and get over because it’s like, “Okay, I’ve gotten used to myself as the girl in the wheelchair.” And using that, knowing how to navigate in the world in a wheelchair, opening doors, all that kind of stuff, all that how you have to maneuver through public spaces. But to do that and go through all of that again in a walker is a whole new set of challenges and people staring. And fortunately I’ve never really had anybody say something rude to me or just be like, “What’s wrong with you?” But it doesn’t mean it’s not going to happen, you know? And that’s…
Brianne: It takes energy.
Felisha: It does take a lot of energy. And walking around takes a lot more energy than pushing myself in a wheelchair, you know? So it’s like, “What am I going to do? Can I do it with the walker? Would it be easier for my wheelchair? What’s the weather like? Is it too hot? Is it too cold? Is it raining outside?” All these factors. And so this year is definitely the year of trying to get more comfortable using the walker. Maybe getting back to driving and experiencing that whole independence again, because I haven’t driven in three years. So to constantly always have somebody have to take you somewhere and being used to this idea that somebody needs to be with you to then get that independence back. It feels like I’m 15 again and just got my driver’s license and I’m like, “I’m free! Where am I going to go?” But this time I feel not quite as safe because I would be an easy target for somebody. You know, I’m a girl who can’t walk very fast, who has a walker. How am I going to defend myself against somebody who wants to try and take advantage of me? And that’s like a real thing that I’m… Like, I don’t want to be a story on the news.
Brianne: Right, right. It makes you feel vulnerable.
Felisha: Yeah. And it’s already a crazy world out there.
Brianne: Yeah. Yeah, definitely. Yeah, and it’s also, I feel like when you were talking about… You just don’t, it’s the kind of thing that you never would have thought of before. And you’re like mentally adjusting, mentally adjusting, mentally adjusting. And that by itself is a lot of work on top of just accepting that this is your body now.
Felisha: Yeah. I definitely think it’s taken me till like maybe six months ago to really sort of settle in. “Okay, this is who I am now with this disease.” A lot of people like to say “I have MS, but it doesn’t have me,” but it has me and I have to figure out who I am with it. Every single second I’m reminded that I have this disease in some way. Either how my body feels or how I get around or how I have to carry things or whatever the case is. And that’s fine. I just, it has taken me a long time to sort of form who I am again. And also another thing that you don’t think about is clothing and how clothes sit on you differently when you’re sitting all the time. And bathroom, how are you going to get to the bathroom in this piece of clothing? Like I can’t wear jeans anymore because they’re just so uncomfortable because they just cut into you right where you’re sitting. But then all that’s left are like sweat pants. It’s like, I don’t want just sweatpants or uncomfortable jeans that I can’t get on and off. You know? So even something like that that you don’t think about as clothing, how that shapes what you think of yourself and see as yourself and how you have to kind of readjust to that.
Brianne: Yeah. Yeah. I mean to me it’s like even getting dressed every day to go somewhere versus not. And like if I had part of my identity tied up in these things about how I look or how I present to the world or what I like to do, you know. Like I’m not a big makeup-wearer, I look pretty sallow right now but that’s because I was sick yesterday. I’m not a big makeup-wearer in general, but even that it’s like lots of people get joy out of putting on makeup and it’s a way to express creativity and I think that’s awesome. And when you’re like, “I’m not going out into the world anymore,” it doesn’t mean I don’t do it, but it just changes the way that you… If you’re putting effort into your appearance and then you don’t see anybody, it just feels different, if that makes sense. And I think clothing, both for… I mean it’s all for comfort, but when you’re sitting all the time or if you have sensitive skin which people with fibro and EDS talk about a lot. They’re like, “Okay, so my clothing choices are really different because I have to think about my body and my illness first.”
Felisha: And in some ways I have to think about that too because anything that’s tight on my feet just makes my legs ache. So certain socks, certain shoes I can’t wear and then that’s going to dictate the rest of the outfit in some way, you know? So I’ve really had to do this sort of revamp of my wardrobe, figure out things that I can still feel cute in, feel comfortable in, and are still functional for me. And that’s been such a quest trying to find, especially pants.
Felisha: [sighs] Pants, man! You know, I can get leggings on and off now, but for a long time I couldn’t. When you can’t stand because your leg is immobile, you can’t wear skin-tight leggings. That’s not the option. So it’s like, “Okay, well if I can’t wear leggings, all I can wear are these big baggy sweat pants.” I just don’t feel attractive. I don’t feel like myself. I wasn’t putting time into my appearance at all because I was like, “Well I’m sick so I don’t have to.” And then it finally dawned on me, “Well I’m always going to be sick. So what’s going to be my excuse for the rest of the my life, you know?” I can’t just look like this ill person all the time.
Brianne: It doesn’t feel good.
Felisha: No, it doesn’t feel good at all. So to figure out how I can do that and not waste all my energy trying to get ready, it takes a lot of planning. Like if I know I have to go somewhere on Saturday for something, I have to make sure I’ve probably showered by Friday and done whatever to my hair and wake up in time to do makeup if I’m going to put makeup on. It’s so much planning. It’s a good thing I was a good planner before all of this happened because I think about all these steps now, but so much thought that has to go into it. “What’s the weather going to be like? Do I need to wear pants? Am I going to be sitting for a long time? Do I need to wear compression stockings? Okay. If I’m wearing compression stockings, I’m not going to be wanting to wear shorts or a dress or something because that’s not cute, they don’t match. But does the weather permit for pants and do I want to wear sneakers? Well if I’m wearing socks, I have to wear sneakers because I’m not going to wear sandals with socks.” And all this kind of stuff. It’s just like a whole nother offshoot of this illness that I didn’t even ever think about some of these things. And you know, something simple like standing in the shower to wash shampoo out of your hair. I didn’t know that was as freeing as it felt. I’ve recently started doing that again. I still have the shower chair and I use it all the time, but I recently started showering standing up to rinse my hair out and I’m just like, “Wow, this feels so normal. And so freeing again.” And it wasn’t anything I ever thought about.
Brianne: Yeah, you took it totally for granted.
Felisha: Yeah, I didn’t even know it was something to take for granted.
Brianne: Yeah. I had really long hair before and a year ago I cut off all my hair because I had a really bad flare and my hair was so long and it was getting so matted because I had nerve pain in my arms and so brushing it was really uncomfortable and I was just like, “I cannot do this to myself anymore. Brushing is hard and showering is hard anyway because of the heat and the standing and the everything.” And I was like, “I need to get rid of this one obstacle for now.” But it’s totally like when you get dressed up and put on makeup and do your hair, which I don’t have fancy hair options yet still, but like, I’ll take pictures or something and you’re like, “Holy Shit, look at me. I also am still this person.”
Felisha: Yeah. Sometimes I’ll put on makeup and when people haven’t seen me in makeup in a while, they’re like, “Oh, you look so nice today! What did you do? You look so great.” I’m like, “I just put makeup on you guys.”
Brianne: I put concealer around my eyes.
Felisha: Yeah. It’s not that serious, but it’s so ingrained in everybody to think of well people as this way and sick people as this way. That if I put in a very minimal effort to not look sick, everyone gushes with, “Oh you look so great, dah dah dah dah!” And it’s like, “Okay…” [laughs]
Brianne: It’s like, “I did do that. It took me a while.”
Felisha: Yeah. Yeah.
Brianne: It’s a whole thing. Okay. Then the one other thing in the body maintenance stuff is do you notice anything with food? Like have you had to change your diet at all? Do you notice anything that makes a difference? I know for some people it’s life changing and for some people it’s not.
Felisha: It hasn’t been life changing to me yet, and there may come a point where changing my diet is what makes the difference. But I’ve tracked it with symptoms and eating bread versus not eating bread and sort of that kind of stuff. And it doesn’t really make a difference for me. So I try and eat healthy, but I also kind of eat what I want.
Brianne: Yeah. Well it’s like one more thing.
Felisha: Something’s got to take… I’m trying as many things as I can to try and feel better. Like if I want mac and cheese, I’m going to give myself mac and cheese. And that may change in the future. I know you were reading The Wahls Protocol, right?
Brianne: I was, yeah. I’m really into it because I like many parts of the book but not because I think that everybody should follow it, if that makes sense.
Felisha: Yeah. And I’ve read Wahls Protocol, this book called Eat Dirt, Medical Medium. I’ve read all these crazy diet books…
Brianne: Yeah, I’ve read so many of them.
Felisha: So many people gave them to me like, “Here, this will help you! Here, this will help you.” And when I was first diagnosed, I was like, “Okay, I’ll try it or I’ll read it.” And kind of the bottom line that I’ve gotten from all that sort of stuff is if you eat well, you’ll probably feel well. If you eat like crap, you’ll probably feel like crap. It’s sort of the underlying thing of it and it’s sort of, well how does eating healthy look for you and what works for you? So I’ve done Whole 30 before. And I do like those recipes and it’s pretty straightforward of what you can and can’t eat. But it’s also not meant as sort of a forever diet, it’s more of an elimination diet and then you introduce things back in. So you know, I kind of go by those guidelines. I think parts of it are really good, like no processed stuff and no sugars and stuff like that.
Brianne: Yeah. Yeah. And it’s like, it’s one more set of rules to follow and it can take up so much energy and when you don’t see a difference, it’s like, “I already have enough like projects to track.”
Felisha: Yeah. I think you have to be nice to yourself.
Brianne: Yeah, I think that makes a bigger difference.
Felisha: It makes a big difference. Like, “Okay, I didn’t eat well for this meal, but I’m not going to beat myself up about it because I know it more or less doesn’t make a huge difference for me and it is what it is.” I can’t take it back and I’m still trying my absolute best to recover and still make improvements wherever I can in whatever way that looks. Even if it’s just standing in the shower.
Brianne: Yeah. Which is a big deal.
Felisha: It is a big deal, but it sounds so insignificant and you kind of think about it, you know? But it is, I understand that it’s a big deal, but to some people that’s like, “You’re not doing enough because you haven’t changed your diet.”
Brianne: That’s exactly the problem.
Felisha: Or, “You’re not doing enough because you haven’t tried hard enough.” Or, “You haven’t willed it away enough.” And it’s like, “Are you kidding me? You have this disease and you try and will it away or you try and change it with your diet and then come back to me.”
Brianne: And that is exactly what I find soooo frustrating about, I’d say the whole paleo movement. Because I pretty much do eat that way, because I do need to be gluten free and I do feel better when I eat mostly low carb, but I don’t track because when I track, I start to get into other mental issues. So I mostly do eat whole foods, like fruits and vegetables and meat. But I’ve read a number of books about it. So Wahls Protocol was the most recent one and I like a lot of that one, I think because she’s a doctor and because she has the disease that she’s writing about, so I feel there’s more in there than a lot of them. But so many paleo books are just like, “You don’t feel well? Good news! It’s all in your control and if you just eat this way, you’ll be better! Why aren’t you doing it already?” And like that’s… Okay, interesting. But that’s not it. I’m not going to be 100% if I just follow all of these rules better. I’m already following enough rules. And the suggestion, like you just said, the suggestion that you just have to do more is like…
Felisha: It’s so insulting. How dare you say that I am not doing enough to make my life what it used to be, almost. And how dare you think that because I have am still using mobility aids and didn’t graduate away from those that my life isn’t the same and it may be not as fulfilling. Yeah. Like who are you to to make that decision?
Brianne: Yeah. And tied up in that too is it’s such a fine of like, “Okay, I am working to accept that wherever my body is right now might be where it is forever and I’m going to keep taking care of it and I’m going to keep being gentle with it. So that also kind of, hopefully that’s not true. Hopefully there are some better days in the future.” But if all you’re doing is thinking that now doesn’t count because you’re not better yet. Like that’s some pretty heavy self sabotage.
Felisha: Yeah. If you’re just waiting to do things when you’re better, then you’re going to be waiting a long time. And you know, I finally came to this realization that I still get to enjoy things. I still get to… Like this year one of my best friends is having her first child, which is so exciting. And I cried when she told me, I had other friends that have had kids during this time and it’s so, it’s so happy to get to see your friends have kids. I get to go hold them and love on them and give them gifts and see these little humans become grown up. I have another friend that’s getting married this year and I’m in her bridal party and I still get to enjoy all these amazing things about life. And who’s to say I can’t enjoy them because I have to use a walker or take a wheelchair to go to a concert or a sporting event or something.
Brianne: It’s like a projected thing. You’re like, “Calm down people. It’s fine.”
Felisha: It’s not your life. It’s mine. And I get to decide how to enjoy it. Bottom line. And if I have to take a nap every day and don’t leave my house only about a couple times a week for something for maybe a couple hours, then that’s fine. That’s enough for me and that’s nobody else’s business really.
Brianne: That’s so real. The holidays this year for me were exhausting. There was too much going on, which is partly my own choices contributed to that. But it highlighted for me that… So we moved, I used to live in California actually and we live in western Massachusetts now and in a pretty small town and I don’t leave the house every day by any means. But like now that my pace of life is so much slower, I am able to go on a walk a lot more. So some weeks I leave the house almost every day for like a half hour walk around town. And then maybe I’ll have one or two bigger excursions that involve driving somewhere and being out of the house for longer. And it’s not something that I’ve done intentionally, but it’s just been a balance that I found that really works. And I haven’t thought about it very much. And then with the holidays, with having people around and having to do more stuff, I hit a wall very quickly. And I was like, “Oh, I have actually reached a point in my own life where it doesn’t even feel like a limitation anymore.” Like I’m happy and I’m making choices that feel good and it’s working. But once you have to translate that to other people’s experience of you living like that, it’s like [groans] something gets lost. It’s just interesting.
Felisha: Yeah. It’s so mind-opening, this whole world of disability. Not just with MS, but there’s so many chronic illnesses that I’ve learned about through listening to your podcast, through different youtube vloggers, all that kind of… Twitter, like everywhere.
Brianne: There’s a whole world.
Felisha: There’s this whole world of all of these illnesses that I had no idea about. How did I go this long without knowing that some people have stoma bags or EDS, I had no idea what EDS was before.
Brianne: Me neither.
Felisha: And you know, like you with your mold allergies and how severe those can get, and chronic fatigue and all of these things. How do I have no idea and there’s this many people suffering with some kind of disability? How do we only know about like… In the media you see like blind people, deaf people, very rarely somebody’s in a wheelchair…
Brianne: Usually paralyzed.
Felisha: Paralyzed, or they’re horribly sick and their life is over. And that’s about it. And it’s usually played by people who don’t have those disabilities. And it’s just like, but there’s so many people out there who experience some sort of disability and I had no idea about any of this. I was just astounded that all of this is going on. So many people just… No idea.
Brianne: Yeah, no, me too. Definitely. And when I started to get much sicker than I ever had been before. And I was looking for resources and it’s like this is nuts! Because my dad died when I was 22 and when my dad died, it was relatively easy for me to find stories about that experience. You know? So people writing about it and memoirs and essays and all of this stuff. And when I was like, “My body is not working and I have no idea why. And my doctor doesn’t know why and doesn’t seem to think it’s a problem. All I want to read is someone else talking about it because that’s how I process stuff.” And there’s so many people out there and it’s still so hard to find final, I’ll say published accounts of it. So like movies or books or essays. And I think partly it’s because all of these people are like… It’s like only being able to work part time, like we’re in this other universe. And so the way that that kind of media gets made isn’t…
Felisha: Doesn’t account for that.
Brianne: Yeah. It’s like not accommodating. And so Twitter is a huge resource. There’s a huge chronic illness community on Instagram. And like vloggers, I’m not a big video watcher as a person, but I know there’s a lot of chronic illness stuff on youtube too. And so it is great, but it’s still, yeah… You’re like, “How could I not have realized how big this is and how many people I probably knew before.” Because even… So I’ve put out 14 episodes, I have I think four more recorded right now and I have one interview tomorrow. And like four or five of them are with people that I already knew, and maybe knew a little bit about it, but not the whole picture at all. And that blows my mind too. And it tells you how hard it is to talk about this stuff.
Felisha: It’s hard to talk about. I think social media probably makes it a little bit easier to find stuff like that. But like you, I scoured the internet for blogs of people with similar stories, for videos, anything that I could figure out. And even with something that’s more well known like MS, there’s not a lot out there.
Brianne: Right. And I would think with MS, it’s like typically more diagnosed when people are a little bit older. So there’s probably not a lot targeted at people in their late 20s, early 30s.
Felisha: Yeah. TAnd all the stories that I was finding were people that had to use a wheelchair for a little bit but then weren’t using one anymore. And it’s like, “But where’s my story?” And everybody’s story is so different that like, I am my story that I’m looking for. And luckily through twitter and different resources like that, I found people that are maybe more similar to me or just people that understand what’s going on. I even go to a local in-person support group here in town and that’s been tremendous. Everyone there is much older than I am, but they still know what I’m going through, some of them have been diagnosed since the late 90s so they really have seen what goes on with this disease. So having them as an in-person resource that I can go to and ask about is so invaluable. But I had no idea that any of this stuff was going on at all.
Brianne: Right, right!
Felisha: How could I be so clueless to this world?
Brianne: It’s not out there. That’s like… I mean I think I probably talk about this in a lot of episodes, so you’ve already heard this rant, but it’s like there’s so many movies about cancer and there literally are not characters with chronic illness anywhere. And like not even really in the kind of inspiration porn world. Like I know most of the time when movies that are about a disabled character come out, the disabled community is not happy.
Felisha: Kind of rip it apart.
Brianne: Yeah. So like, okay, there’s this one thing happening and it kind of sucks. But like having characters in TV shows or in movies who also are managing whatever, like any kind of chronic illness. And so it’s like they’re there sometimes and they’re not there other times and it can just be a part of it. Like, we don’t know that that happens.
Felisha: Well maybe part of the problem is so many doctors don’t take some of these things seriously.
Brianne: I think that’s a huge part of the problem.
Felisha: So then people just don’t take it seriously, you know? Especially with something maybe like fibromyalgia or just like “I hurt everywhere.” How does that… How do you translate, you need your own language for chronic illness and it doesn’t exist.
Brianne: No, that’s real. Because we use the same words, but they mean different things to people who have not experienced them for sure.
Felisha: Like I’m always tired. Fatigue. It’s not crippling most days, but it’s always kind of a vein of tiredness there. And sometimes my boyfriend’s like, “But you’re always tired.” I’m like, “What do you want? I have this illness that makes me tired and it’s always going to be there. So just get used to me saying I’m tired.”
Brianne: Yeah. Sometimes I just need to talk about it. Yeah. Tired is a good one. Or fatigue.
Felisha: Fatigue maybe describes it a smidge better but not really,
Brianne: And they also, to me can be different feelings. Because fatigue doesn’t necessarily mean that I want to sleep versus tired probably means that I want to sleep. Fatigue means that my body’s having trouble moving. I think, to me. But that’s part of the problem is that probably everyone uses it differently because it’s poorly defined. Okay. I think we’ve covered all of my main stuff. Is there anything that’s come up for you or that you’ve been thinking about lately that you wanted to throw in there? It’s okay if the answer is no.
Felisha: I don’t think so. We kind of covered a lot. I guess the big one for me was reimagining my body image and how I see myself, though we kind of covered that with clothing and stuff like that.
Brianne: Yeah. Yeah. And what feels normal. I think I’m really struck by when you were talking about the shower and being like, “It felt free to be doing this thing that should be normal.”
Felisha: Or like standing to do the dishes at the sink. I never ever thought I would enjoy doing that, but there’s a weird enjoyment out of doing this thing that I didn’t do for two and a half years.
Brianne: Yeah. And being able to be… Whatever that looks like and enjoy those moments when they come and also accept that it’s not all the time. It’s a hard battle. Like grief for your body, acceptance for your body, and then each day appreciating the things that work. There’s a lot in there.
Felisha: There’s so much in there.
Brianne: Awesome. Well thank you so much for talking to me. I’m so glad.
Felisha: You’re welcome! Thank you for interviewing me.
Brianne: It’s good. I love having these conversations. I know not everybody would maybe.
Felisha: I think it’s just fascinating to see the disabled community and how that looks different and what accessibility looks like for everyone. And just all these things that you don’t think about. You know, something that’s been in the news recently is plastic straws and people being like, “Well I have to use plastic straws.” And it’s like, why does this group of people have to defend themselves so strongly? If they say they need to use a plastic straw, let them use a plastic straw! And everybody else that doesn’t need a straw, just use as a metal straw.
Brianne: Or like! Yes. The plastic straw thing. Because that was… It happened a while ago and then it just came back because I saw a lot of it yesterday and I was like, “Why is this happening again? We don’t need to have this conversation again!”
Felisha: Yeah. And I don’t have a problem with straws. But swallowing and that sort of stuff can be an issue with MS. So maybe someday I will have an issue with straws. And it’s like if there’s a group of people that are advocating for this thing, whatever it is, whether it’s straws or ramps or parking or whatever that thing is. If they’re speaking up, they have probably already thought of all the alternatives that they can use. The different reasons why metal straws don’t work, why silicone straws don’t work, why paper straws don’t work. And I’m just using that as an example, the whole straw thing. Why don’t we just listen to them? Why does it have to be such a battle?
Brianne: And if you’re so worried and you don’t need one, then don’t use one! And you can also do advocacy. Sure, it’s annoying that a lot of diners give everyone a strong no matter what. So instead of banning straws, we could be like, “Hey, maybe don’t give everyone a straw. You can just ask who needs a straw?” Like there are a lot of intermediary things that we can do that will reduce straw usage if that’s what you’re worried about without taking away something that a group of people finds very valuable. It’s like the straw thing and then the pre-peeled oranges or pre-chopped apples, those come up a lot too.
Felisha: Precut vegetables and all that sort of stuff. And people being outrageous.
Brianne: It is wasteful, but like…
Felisha: I already have to pay more money to have that done. It’s already this sort of disabled tax that’s been built in so it’s like if I need to pay extra money for some chopped up carrots, let me get my damn carrots or whatever the case is, you know?
Felisha: And if you don’t need to buy pre-chopped food then don’t buy pre-chopped food.
Brianne: Yeah. Like it is annoying. I would say go after the stuff that is not torn apart. Like when they have full bell peppers in plastic bags. Like that’s wasteful and there’s nothing else going on there, there are so many other places to start. And also the consumer end of plastics is not the main problem with ocean pollution. Like there are so many places that you can jump in here. And also people who want to be mad about it are happy to tune out anybody else. Yeah. I was grumpy when I saw straws on twitter yesterday.
Felisha: Yeah. We should just believe people, you know, and not think of people as just being attention seekers or pill seekers or whatever. Because it seems like, okay, how many people actually are like that?
Brianne: Right? Oh yeah, yeah.
Felisha: Because Yeah. How many people are actually like that versus how many people are actually trying to get help and they’re not getting it because they’re flagged for whatever reason? Yeah. Sorry my dog’s over here and she’s stuck. She got stuck in the groove.
Brianne: [laughs] I think I see like a tiny little bit of fluff. Oh, there we go. What a cutie! But yeah, that’s totally it. I just can’t, like, things are so much more complicated than that. And to just flag people as drug seekers and be like, “No, they don’t deserve help.” You’re like, “Okay, if somebody is exclusively an addict and has literally no other problem, that’s still a person who needs help. And maybe the ER isn’t the best place for that. But then we need other solutions.” And if someone has chronic pain, the ER… because I’ve had lots of conversations with people like that too. They’re like, “My friend or my boyfriend or my family member took me to the ER because they were so worried about how much pain I was in and I didn’t want to go because I knew they wouldn’t help me, but they were worried and didn’t know where else to take me because there’s nowhere else to go.” And that’s a whole big other thing.
Felisha: Yeah. And then with the big opiod debate and all that sort of stuff. And it’s like, I’ve listened to so many podcasts about chronic pain and chronic pill use to try and help with that pain and how they’re not… I don’t remember the right terms right now, but how addiction and needing to use pills for chronic pain are not really connected and all that sort of stuff. It’s like people don’t know about that. They’re just like, “You’re in pain, you’re seeking pills, we’re not going to give you any.” Because this thing has happened and we don’t know how to fix it. But there’s people out there who are truly suffering that need the help however that looks.
Brianne: Yeah. And I’ve been thinking about that too with going to the doctor… one of the things that’s difficult is now that I’m out of that bad flare from last year, I do still have some pain, but it’s not… I don’t have any symptoms that are aggressively concerning, but I don’t leave the house that much. Like fatigue is still an issue basically. But going to the doctor and saying that you have fatigue is not effective basically. Like most doctors don’t hear that and think that there’s a problem. And so I also think that a thing that happens is that if you do experience any pain, when you go to the doctor the doctors will hear that more than anything else. So if you’re like, “Well I have debilitating fatigue and also I have a skin pain and I have nerve pain.” They’ll be like, “Oh! Skin pain and nerve pain. We’ve got to fix those.” And sometimes those are number one. But to me they’re definitely much lower down the list because they’re not all the time and they’re not that severe right now. I don’t need pain management at this time, but I’m still more likely to get a pain medication than I am to get further testing or a better referral. And then you get punished for getting more pain medication. There are so many things.
Felisha: I know, there’s so much! And fortunately, I don’t deal with a lot of these things, but I still feel like I have to advocate for them because there’s not enough people advocating for these things.
Brianne: Yeah. And when you are in a position where it feels okay to use your voice, like when I started doing this, I was like, “I’m well enough now that I feel like I can put something out there, so I would like to do that.” And I’m not publishing an episode this week though, because the last 10 days have been nuts. But I’m publishing like a five-minute “there’ll be no episode this week.” But man, it’s a lot.
Thank you for listening to episode 19 of No End In Sight! I have eight more interviews recorded right now but I haven’t decided which one to release next so you’ll just have to wait in suspense! Make sure you subscribe on iTunes or Stitcher or wherever you get your podcasts to find out when new episodes are released.
If these stories are resonating with you then I’d love to hear your story! I’ve been talking to a lot of straight cis white women, so I’d particularly love to hear from other perspectives. To learn more, just head to noendinsight.co and click “Share Your Story.”
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And don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s pretty small right now, but I’d love it to become a place where we share resources about building a business while prioritizing our health.
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I’m slowly working on my winter patterns, and I’d love it if you checked us out at digitalartisanal.com.