Transcript: Episode 295
295. Caring for the Body (Medical Appointments, Part 1)
Welcome to the System Speak podcast. If you would like to support our efforts at sharing our story, fighting stigma about Dissociative Identity Disorder, and educating the community and the world about trauma and dissociation, please go to our website at www.systemspeak.org, where there is a button for donations and you can offer a one time donation to support the podcast or become an ongoing subscriber. You can also support us on Patreon for early access to updates and what’s unfolding for us. Simply search for Emma Sunshaw on Patreon. We appreciate the support, the positive feedback, and you sharing our podcast with others. We are also super excited to announce the release of our new online community - a safe place for listeners to connect about the podcast. It feels like any other social media platform where you can share, respond, join groups, and even attend events with us, including the new monthly meetups that start this month. Go to our web page at www.systemspeak.org to join the community. We're excited to see you there.
[Short piano piece is played, lasting about 20 seconds]
This podcast episode includes a trigger warning for discussion of caring for your physical body, including references to medical appointments and different procedures such as obgyn appointments, annual women's exams, mammograms, and other routine care like dentists and eye doctors and ear doctors. There are some references to specific triggers, as well as big feelings that may come up in response to those triggers. As always, please care for yourself during and after listening to the podcast. Thank you.
*Conversation begins*
We are going to talk today about caring for your physical body. I know. That's exciting, right?
But here's the thing: All of you share the body. And all of us have a body. Like, it's kind of the whole point of being on planet Earth, right? Obviously, this is a big topic because there's a lot that has to do with caring for your physical body.
And there are several things I'm not going to talk about today. Number one, I'm not talking about the dentist. [Laughter] We have already talked about the dentist several times, and the dentist isn't the same as caring for your physical body. It's just hell. [Laughter] So I'm not really going to address that today. But hopefully you understand that caring for your teeth and going to the dentist is part of caring for your physical body. The only thing I will add about that is that I know sometimes between depression and things like triggers of having things in your mouth, or sometimes when people are super depressed, doing something like actually brushing your teeth can be very overwhelming or anxiety provoking. And I get that, and I do. But that's definitely something even to work on in therapy, even if it's just about brushing your teeth, because there is so much about your physical health that's actually impacted by your teeth. So that's all I'm going to say about that today, because it's just really important that you care for your teeth. It helps you care for your heart and all kinds of other things. But I get that it's a trigger. And I get that it can be overwhelming, especially when people have really bad depression. And so I'm not going to go into that today. And I'm definitely not talking about the dentist. But make sure that that's on your list. When you're thinking and exploring and talking with your system about how to care for yourself, make sure teeth are part of it.
The other thing that I'm not going to go into detail about, but that is kind of obvious when you talk about the dentist, we also talk about the eye doctor. And for some of us going to the eye doctor regularly is kind of important because we have to be able to see. [Laughter] And we need some glasses. But the good thing is that there's lots of choices now and there's lots of ways to handle that. This can also be kind of triggering because when you sit in that chair, and they shoved that big metal frame at your face, like if that's not bad enough, then they scoot their chair up in and are looking so that their faces right on the other side of your face. That's intense. So I get that that can also be triggering, even for some of us who have been through certain kinds of trauma, having to sit in a chair with lots of equipment around us like that can even be triggering. So I get that it's hard, but being able to see is kind of nice. And if you can get yourselves through an appointment, then it's actually super cheap to get glasses online now. There's lots of websites where you can order different frames for not very much money and have different choices for what you want your glasses to be. And even sometimes could get several different kinds of frames or different pairs for about the same as what you could get for just one pair at the eye doctor. You can also order sunglasses that way that are in your prescription, and you can do it online, and it's really helpful. So that's just one idea. And we'll talk about getting through an appointment later when we talk about the actual medical doctor. So I don't want to go into great detail with this on the eye doctor.
But also at the same time, some of us have medical eye doctors, meaning you can go to an eye doctor just to get your prescription, and you also can go to an eye doctor that is a medical doctor who can give you prescriptions for when you need special things. So for us specifically, we can't just go to an optometrist only, we have to go to a special kind who can also do prescriptions for our eyedrops because we have Sjogrens. And so when you have some kind of specialty care like that, following up with those kinds of providers are really, really important in caring for your physical body.
Another kind of specialists that I have to talk about, of course, is the ear doctor. That can be an ENT, an ear, nose and throat doctor, or it can be an audiologist. But as a deaf person with cochlear implants, that can also really be important. The challenge in America is that it is very rarely covered by insurance. And hearing aids, for example, can cost anywhere between $2000 and $4,000 just for one, and our cochlear implants are like $15,000 or $20,000. Like it's so expensive. In fact, we actually have a part missing from one of our cochlear implants right now, the processor, the outside part that sits on our head, one of them is actually missing apart. It fell off outside on the sidewalk and broke a piece off. And we just can't get it fixed because it costs so much money just to get a tiny little part, right? And so we have to be extra careful that we don't lose that because if that falls apart the rest of the way we literally cannot hear at all on that side. Because without our cochlear implants, we can hear nothing. Our auditory nerve was cut for that surgery, and there is no sound at all. Not even like leftover a little bit, or at certain pitches, like, nothing. With our cochlear implants on our head, we can hear nothing.
So those are kind of the basics for most people, right? The dentist, and the eye doctor, and the audiologist, or getting your ears cleaned, or getting your hearing tested at least a couple times as you grow up or get older. You should kind of make sure, like, in school they kind of screen you for that automatically and then you forget about it when you're an adult. So just remember that from time to time you should really follow up on those general things as part of caring for yourself.
There are also lots of specialists that you may have to follow up with certain issues. So like, if you have sleep apnea, and have a CPAP machine. Or if you have a neurologist, like our son with cerebral palsy and spina bifida, he has a neurologist. And our daughter sees a cardiologist and a pulmonologist and all kinds of specialists like the ENT and other people who all take care of her airway working on that together. She also sees a dietitian and a nutritionist that help work with how many calories she's supposed to be getting, or her feeding tube, or anything like that.
And other people may also work with dietitians or nutritionists if they have disordered eating going on, or struggles with swallowing or things like that. And I’m not going to talk about that. But Annie Goldsmith is the one you would look up If you want to talk about that. And we have had her on the podcast. She's amazing and we love her work. So that's an example of a specialist.
Another example of a specialist would be an oncologist. So like when we had cancer, that was the oncology department that took care of us.
So I know you guys know about specialists, and that there's all kinds of different specialists who help with different things. But the point is they can't help you if you don't go see them. And not that everyone needs all the specialists. But when your body's doing something weird, or if you're hurting, or if something's actually wrong and you're not taking care of it, they can't help you and it's adding to the pain of what your body has already endured.
And really, what I'm actually going to talk about today is just going to your regular doctor. And going to your regular doctor for like preventative care is what will prevent you from having to spend a lot of time with specialists, or it will help you find the right specialist if there's really something going on that you need help with. Like when we found out we had Sjogrens, or when our cancer was diagnosed, we got to the specialist who literally saved our lives and helped us because we were going to our regular doctor who found out what was wrong and what was going on.
But I know it's kind of a big deal, and I know it can be scary and it can be overwhelming. And so that's what I'm going to actually talk about today is just this piece. Because that is basically how we spent our day today. We got up at two in the morning and worked until about seven. And then we did our little workout, don't be laughing at us, we did our little workout using a workout video on the computer, and then doing some yoga and some stretching. And that is one way we care for our physical body is having some movement every morning or throughout the day in different ways.
Now, this is a big deal. And I'm telling you this, there are some intense like workout people out there. And that can become its own addiction. And there's actually even a word for it now, but that's not what I'm talking about. I am talking about mindful movement that is caring for my body in an attuned way that feels safe for me. And so, so we watch a workout video every morning because that is a healthy thing to make sure that our body is strong and moving and has capacity to function in the ways that keep it healthy. But as we do those videos, we adapt what we need to adapt because our body has been through a lot of injuries and trauma because of abuse. And so there are leftover issues that our body is very sensitive to that limits what we're able to do in working out. There is no shame in that. That is not our fault. That is what our body has already been through. And listening to that and respecting that is really, really important.
The other thing that's important is that, at least for us, is that we are working out to be healthy and strong. We are not working out to be skinny, to be what someone else says we should look like, or because of counting calories or worrying about anything like that. We don't even track that. We eat healthy foods, and we move our body so that our body has the fuel that it needs, so that we eat foods that are actual nutrients, so our body is getting something from what we put into it, but also that we enjoy because eating can be a trigger too, and we move our body in ways that are gentle and careful and intentional, but help us be able to play with our kids or work on our land or go for walks and things like that.
Okay, so we do that every morning. And then after that we have our little quiet time with like our scripture study and whatever we're reading, and then we take our shower and get dressed for the day. So we had to do all of that this morning before eight o'clock, so that we could leave on time to get to the doctor.
Going to the doctor can stir up all kinds of anxiety for lots of reasons. There are triggers related to the body. There are triggers in the office setting, or in the caregiver setting. There are triggers in being told to lie down, or to sit in a certain place, or to sit a certain way, or to scoot down, or whatever. There are all kinds of different triggers involved in just a regular exam even when nothing is wrong. So let's just be honest about that and sit with it for a minute, and back up, and look at what we have to go through just to get to the appointment.
The first thing is actually even making the phone call to get to the appointment. When we lived in Kansas City, we were able to use the computer to make our appointments and they automatically had interpreters for us when we showed up for the appointment. That was amazing. And that's actually how it's supposed to be legally, but it's absolutely not what happens in Oklahoma. So I know even before going in that there's already a battle. And that because these people are not properly trained in how to get interpreters, and because these people don't want to pay for interpreters, that everyone is already stressed out, and kind of dancing around it or avoiding it or just directly aggressive with me because of it. And it's not my fault that I'm deaf. Like, it's not something I'm trying to do to make people other people's lives harder. And so having to just set that up makes it difficult before I even ever get to the appointment. So that's a tricky thing. But the husband and I sometimes make phone calls together. And so I will say, or he will say like, “Hey, I have to make a phone call. Can you just sit with me while I do it?” Because it gets so anxious, because we get so anxious having to do it, but somehow just having someone else there, or nearby, just somehow is like soothing or calming. So if you can find a safe person and just say to them, “Hey, I just need to use my phone to make this appointment and to call these people so that I can set this up. I don't need any help doing that. But I can't do it by myself. Can you just hang out with me while I do that?” Sometimes that's really helpful, right?
And then I know that for us, even after we get there, actually going inside and getting ourselves to actually show up for the appointment is also a lot of work. And so that means I know that we have to be in as good of a space as possible and arrive early to our appointment so that we have space and time to approach our appointment gently and intentionally. So that's why we got up super early to have our work done first. Now we're working online, we have that privilege, I guess, because we can adapt work in that way. And it meant we needed a nap later. [Laughter] Because that was too early to get up on a normal day. But for us, because we work with international clients, that's actually a common thing that we get up super early to work and then that way our work is done and we spend the day with the children.
But this day, the husband stayed with the children, we got up super early to get our work done so that that was one thing we didn't have to worry about while we were trying to go to the doctor. Because when you're anxious about something, what happens sometimes is like you get anxious about one thing and then like a whole list of other things start to bubble up as well. So the more of those other things we could take care of, the less anxious we could be about the doctor, even though we were still anxious about the doctor appointment itself. Does that make sense? So we did things like we made sure like our house was clean the day before. We made sure that the children had their breakfast laid out so we weren't worrying about if they were taken care of or not. We made sure that our work was finished so we wouldn't be stressed out about hurrying through the appointment to get back to work. We have these little bunnies from when we were little bitty, and if you read the book you know what those are, we have these little bunnies and we keep them in our little bag with our keys and our insurance card and our driver's license so that we know that those are nearby, even though we aren't going to be like having them out in front of the doctor or a child part at the doctor, those are nearby. And sometimes on the way to an appointment or on the way home from an appointment, we can just kind of hold them in our hand so that they feel so that, so that we feel safe and feel those close, but that we are still functioning externally to get to the doctor, get through the appointment, and then get home safely. Does that make sense?
So that helps a lot. And it gives us time to sort of orient ourselves of, “Hey, we're at the doctor's office. We're in the parking lot. The car is parked and we're gonna go into our appointment. Here's what we know we have to do. There might be some things we don't know that we have to do.” And just sort of orient ourselves.
And I'm really, really glad that we did, because guess what? We got there and they were remodeling. And so even though we usually know where to go, because we've gone to the same doctor for like a decade now, everything was moved around. And there were new walls up that weren't there before. There was a different entrance. We were supposed to use the mask protocol and six foot apart, like where you're supposed to stand on the floor, and where you can sit in the waiting room. All of these things were all different because of the pandemic, like it was so different. And there were so many changes. And for them that just work there every day, it may be frustrating. And it may be an annoyance, but for us, it's a really big deal. And that was hard. And I was so grateful that we had that extra time before our appointment to sort of navigate that.
So we walked in and saw the chaos, and actually left and went back to our car, and then kind of processed what we saw, figured out what was going on, and went back and walked over to like where the restrooms were so that it looks like just like we were walking through on purpose, and kind of checked things out as we walked through and then went back to the car again. [Laughter] And then we kind of orient ourselves, understand what was going on, understand where we were supposed to go and what we're supposed to do, and we went back into the medical office building, and like found our way to the actual desk where we were supposed to check in, and survive just that piece of things. Right?
The other thing that we did that was helpful is we asked them to email us the paperwork ahead of time. So they emailed it to us, we printed it, and already had everything filled in. So that when we were all anxious and all the remodeling was happening and all of that chaos, all we had to do was just check in, hand them our paperwork and go sit down. We didn't have to talk. We didn't have to try to focus. We didn't have to try to remember answers that we can't remember because only two of us know the answers to those things. Like we didn't have to deal with any of that because we already had our intake paperwork filled out. I recommend that 100%. 100%. Anytime you're going to a new appointment or an appointment where there's paperwork, please ask if you can fill it out ahead of time.
We learned this because we have six children. And so anytime we go to a new doctor, there's so much paperwork to fill out. I can't even tell you like five or six or seven pages times six kids. That's like so much paperwork, I can't tell you. So we got in the habit of asking for paperwork ahead of time so that we can have it filled out when we get there instead of having to fill out 50 pages while also managing six kids in a waiting room. So it really makes a difference. So we just were able to hand in our stuff and turn it in.
Now, when we are sitting in the waiting room we know what happens next. The next thing is that a nurse is going to come get us to take us back, but that on the way over, but that on the way to our room, but on the way to the examination room, she's going to weigh us. Now a lot of people have weight anxiety. I don't actually have weight anxiety, although maybe I should, I don't know. But we've worked really hard on some body issues and kind of are just okay with us being ourselves. We gained weight after cancer and the hysterectomy and the steroids and things like that, and I tell the husband all the time, like our body is like has this, like, Winnie the Pooh shape or something. And we are heavier. But we have this like, little bitty Beetlejuice head. Like, I don't know. I don't know. We are just more than average. I don't know. I'm a big girl. I, I look, my body is shaped exactly like my ancestors. We have, like, stout native bodies. And I'm just okay with that.
It is important for me that we eat mostly healthy. And by healthy, I mean that we eat nutrients that feed us and fuel us and tastes good, like healthy for our souls and our spirits and our bodies. I don't want to talk about food more in detail because I don't want to trigger people who struggle with that. And again, I would refer you to Annie Goldsmith. But our rules for eating are only that we enjoy it, that it, that nutrients are involved at some level, and that we eat when we are hungry. Because we have had so many years where we were not allowed to eat, and then so many years before we could not eat, that we are working on when our body is hungry, our body needs to eat. And responding to our body in that way and feeding our body. So I am not so worried about numbers on a scale. I am more worried about are we eating? And are we eating nutrients? And are we feeling safe when we eat? And those are all things that we learn from Annie Goldsmith, and it has made a world of difference in what we are able to do caring for our bodies. But we know that's coming.
But the other thing about that for us is that we can't hear. And so we have a lot of anxiety sitting in a waiting room because we can't actually tell when they call our name. So usually what we do is sit directly across from the door so that when the person comes out to like call us back, we can either see them recognize us and smile or wave or what motion towards us, whatever they do, or we can read their lips to call our names. Except that now everyone is wearing masks, and we cannot lip read when people are wearing masks. And so it is extra difficult to understand, to know when it's our turn, and there's a lot of anxiety. And so we just have to do our best and communicate that even at the desk of please wave to us when you call our names because we can't hear you. Like, we just have to tell them that's what we need. So it's an example of practicing. We're actually caring for our body by practicing saying what we need and asking someone to meet that need. Like, having to do that directly in such a simple way feels like a really big deal. But it's actually excellent progress.
So we go through, we get weighed, we go to our waiting room. And then in the examination room, I know there's lots of triggers. Now, here is some good news. The good news is that even though cancer is awful, and even though we had to have a hysterectomy plus bonus prizes because of scar tissue from the abuse, the good news is because everything was taken out—everything—we don't have to have the pap smear and the women's exam every year, have them all up in our business looking at our parts of our part. So this is excellent news. So congratulations to us. That makes it like a lot easier and much better that never again do we have to go to the doctor and go through that triggering experience where they have to do those examinations.
But for those of you who still have to do those examinations, talk with your therapist. Make a plan. Talk to your doctor or find a trauma informed doctor. There are ways to do that. Not to avoid caring for your body in the ways that you need to care for your body, but ways to do it carefully and intentionally and gently. And I know that one of the big movements right now has to do with women who get IUDs placed or taken out, that there is medicine you can take for that for pain, for anxiety, for comfort, or even to be asleep when that happens. Because it is painful and it is uncomfortable. And it's not okay for another doctor, especially a man to tell you that it's not. So it's okay to speak up about those things that you need.
*Conversation pauses*
This conversation will be continued and the next episode, as well as with a guest next week.
As always, thank you for caring for yourself during and after listening to the podcast. Thank you.
[Break]
Thank you for listening. Your support really helps us feel less alone while we sort through all of this and learn together. Maybe it will help you in some ways too. You can connect with us on Patreon. And join us for free in our new online community by going to our website at www.systemspeak.org. If there's anything we've learned in the last four years of this podcast, it's that connection brings healing. We look forward to connecting with you.