Top Therapists Share Tips for Surviving EDS (Ep 141)

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Melissa Dickinson: [00:00:00] We both have training in sex therapy, so we get to start with a leg up in terms of creativity and open-mindedness. Oh, leg 

Tom Query: up. Oh my God.

Melissa Dickinson: Oh, that was a, that was an interesting choice.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility md. I am so excited to introduce you to Melissa Dickinson and Tom Query this amazing couple are both counselors and therapists. I met them in Las Vegas in 2017 at the EDS Society Conference and had dinner with them.

They are just incredible people. They are so knowledgeable. Melissa has EDS [00:01:00] and has been through the wringer. She's gonna share with you so many experiences that she's had and how their relationship started out with some really surprising revelations. I think you're going to find this conversation really helpful, whether you're a caregiver or an EDS patient, or you have some other role.

Melissa Dickinson is a licensed professional counselor specializing in neurodiversity gender affirmation, trauma and chronic illness. She and her husband Tom, created the Wellspring Counseling Coaching and Transition Center in Atlanta, which is a collection of highly skilled and talented professional counselors and change makers.

Melissa is the founder and executive director of the Georgia EDS and Hypermobility network with over 1500 members. Tom Query worked 35 years as a licensed professional counselor and director of several mental health centers and one stateside disability agency. He came to specialize in life changes, sexuality, and gender.

Tom has a long history of working with crisis [00:02:00] and grief. He was one of the first mental health professionals deployed to New York immediately after nine 11. He has been a teacher, trainer, and ally for a wide range of marginalized groups. He is also an ordained minister, though he says he carries his collar in his back pocket.

Earlier in his career, he was a professional magician. I am so excited about chatting with Melissa and Tom today. I think we all know that navigating relationships with chronic illnesses like Aler, Danlos syndromes and hypermobility spectrum disorders is very challenging, so I'm really thrilled to chat with them and get some tips that all of us can benefit from.

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end, Sue. Don't miss any of our special hypermobility hacks. Here we go.

I am so excited to finally get to chat with Melissa and Tom, and how are you guys doing today? [00:03:00] 

Tom Query: Uh, well 

Dr. Linda Bluestein: good. Doing great. Glad to be here. Good. Oh, I'm so glad to finally get to sit down and chat with you both. And I'm gonna start with you, Melissa. Can you describe how you ventured into dating Tom in terms of when and how you revealed anything about your medical problems?

Melissa Dickinson: Well, when I first met Tom and we were getting a little closer and started dating, I actually didn't know what the family mystery illness was yet. I just knew that something ran in our family. So that, uh, a couple of dates and I said something like, my family has a quirky series of medical issues. I just wanted to give you a heads up and if I learn more about that, I'll.

I'll tell you more about it. Um, fast forward in time, it was actually after we married that we learned that I had Eller Sandler syndrome after we went on our honeymoon and [00:04:00] I had a Cipro exposure that rapidly accelerated my health decline. Got in front of a pain management doctor trying to find options after I subluxed my neck.

And when I got in front of them, they happened to be very familiar with EDS. Immediately noticed I was moving in ways that I shouldn't be able to do and referred me to genetics. So we came back from my honeymoon where I had my first two subluxations walking my dog down the sidewalk and within six months realized I had a genetic illness that we were going to have to adapt to.

So I kind of hood winked him by accident. 

Tom Query: She was in a wheelchair by then. 

Dr. Linda Bluestein: Wow, so, so things changed very quickly it sounds like. 

Melissa Dickinson: Yes, CR was an abrupt acceleration. 

Dr. Linda Bluestein: Wow. Wow. And I know a lot of people asked when I was telling them that I was gonna, speaking with you, be speaking [00:05:00] with both of you, they wanted to know, like, what would you recommend to other people in terms of when it's a good time to reveal this kind of information?

Melissa Dickinson: Hmm. I have, uh, done a lot of thinking about that. And if I had known earlier on, uh, I probably would have, um, time to that with the second date if I were talking to somebody that was important to me and the first date went well, the second date may include a statement like, I'm aware that I have, uh, a chronic illness, and wanted to go ahead and disclose that.

And if we start spending a lot of time together, then I will start inviting questions so that you can learn more about that and assess for yourself if you wanna continue this journey together. 

Dr. Linda Bluestein: That's, uh, I think that's such a great way to put it. And, and Tom, did you hesitate at all due to the challenges that Melissa had?

And of course, the timing sounds like it was really [00:06:00] interesting in that, you know, this, uh, honeymoon is like, oh 

Tom Query: boy. She, she had already tricked me into marrying her. I was already locked in. 

Melissa Dickinson: Somehow he stuck around. 

Tom Query: But from early on I had no hesitation of saying, whatever this is, we'll get through it together.

Dr. Linda Bluestein: That, that's amazing. And, and I, and I know there's, uh, already gonna be people going, I need to find a tom. Where, where, where can I find one? I I'm anticipating getting messages like this. I'm sure, Melissa, you hear you hear this all the time. I do. Um, Tom, what has been the hardest part of being Melissa's partner when it comes to EDS?

Tom Query: Uh, that instantly is watching her be in severe pain or. Whatever is going on at the moment, and I have nothing that I can do to help her. That is absolutely the most difficult. I feel so impotent. I just sit there and it is so hard to watch, uh, when she [00:07:00] is having difficulties. So that's absolutely the hardest part.

Dr. Linda Bluestein: And, and in terms of, uh, what do you and other caregivers try to do to cope with your partners, um, EDS and other health problems, especially as you yourself may have your own health problems. What, what do you recommend? 

Tom Query: And Yes, I do have some significant health problems and honestly, when we married Melissa was going, I'm gonna be taking care of you as you age.

She really did say that and expected that, and when it flipped, um, it was, she didn't like that with the caregivers. Uh, when people come into our caregiver group, they're new, they don't know much about EDS. They are, uh, really struggling with, are they just lazy? Are they making this up? Is this psychiatric?

They come in with these intense questions and panic about it, and we try to do a lot of early education about what, [00:08:00] what to expect, that it isn't, she's not ever gonna get better. Uh, those kind of things. And, um, uh, and that is what we want people to have is the data. If they have that, then they can kind of know what to expect.

When we get on each month, uh, we pretty much say, what's the worst thing that happened this month? And we, we'll babble about whatever that was. And, uh, then we'll go, oh God, we really understand that. And maybe here's what we, I did when that happened, or whatever. If nothing else, it's just saying, I really understand how tough this is.

Most of us lost our, the lives we wished we had had when this happened. That's for Melissa and me. Uh, we had to put all of our dreams, uh, on hold. And that's probably another one of the more difficult ones that I hear from a lot of the caregivers is, um, uh, what do we do now? Uh, Melissa was a hiker. We used to love to go out in the mountains.

Uh, we just [00:09:00] recently, we can do that again, and she may tell you why, but, um, I, uh, we, we just try to give people enough data so that they know what is going on. 

Dr. Linda Bluestein: Yeah. And I think, you know, dealing with that loss, right? 'cause I mean life for any, anyone EDS or, or not, um, life is a series of losses, you know, whether it's, you know, actual deaths or, you know, health problems where you can no longer do the things that you used to be able to do.

Um, you know, I think that that's, uh, it's great that you run this group so people can talk and share their experiences and I, I bet they find that really helpful. 

Tom Query: I jotted down the word when I was thinking about this for you, and it's the word Im, uh, impermanence. It just seems like nothing is permanent, everything is impermanent.

Everything in life is that way. 

Dr. Linda Bluestein: Mm-hmm. 

Tom Query: And, uh, so those are some skills that a lot of us don't get taught growing up in our families of origin or, or faith communities. And, um, that sense of being able to [00:10:00] deal with things turning badly is something we all have to do. Just like you said. 

Dr. Linda Bluestein: And Melissa, I'm dying to hear how you were able to hike.

Uh, more recently, 

Melissa Dickinson: uh, last year I had the good fortune to get in with Sunil Patel and get tethered cord surgery. Ana. In South Carolina, it had been missed, uh, by every clinician I'd ever consulted on my spine. Uh, they saw it instantly. It was actually a pretty severe case. I was probably born with tethered cord.

We now know and we suspect I have three other relatives with it at this point. And, uh, it was choking my ability to walk and to manage my CSF fluid. And I had intracranial hypertension as a result of those issues. But that surgery within three days, when I was finally allowed to get up off the table and move, I never stopped walking from that point.

I now walk every [00:11:00] day for exercise and it's not like, you know, I'm cured or I have no issues, but there is something very special about getting a part of you back that you lost over 10 years ago, and the ability to walk in the sunshine and take in the fresh air and rely on my legs more than I have been able to in a long time has been a really good emotional experience for me and giving me some confidence that this story can continue to evolve.

Dr. Linda Bluestein: Oh, I'm so glad to hear that incredible, uh, story, and I'm so happy for you to have that great outcome. So we released an episode recently where I interviewed Dr. Patrick Linga, who is obviously also very well known. Yes, she's amazing. Um, for her work in tethered cord, uh, release surgery, in particular, occult tethered cord, which right.

Doesn't show up on imaging. And when I shared that episode on social media, I had [00:12:00] so many people respond, I'm her patient, she operated on me. I'm doing so great. And, uh, it was so great to see all of that, you know, because obviously some surgeries are, you know, they, you can still have a good outcome, but the.

The risk benefit ratio is a little bit, you know, less optimal. So for tethered cord, it seems like that's definitely one of those surgeries that can make a huge difference for people. This is not medical advice for any particular person, of course, but, um, I'm, I appreciate you sharing that story and, and we'll link that particular episode also in the show notes so people can check that out.

Tom Query: The hard part of that is that it took, was it three years or two years to get in to have a good book? Yeah, 

Melissa Dickinson: it was about three years to get in. Um, and I'm so glad that I had, um, reserved my space in line because I never thought I would get through or, and wasn't sure it would be helpful. And obviously it has been transformative for me.

It was worth it. 

Dr. Linda Bluestein: Yeah, I [00:13:00] tell my patients that if they, if they feel like they, or if I feel like they may need to see a neurosurgeon, either because they have cranial cervical instability, atlanto axial instability, tethered cord, et cetera. I, that's what you said about keeping your place in line. I say get in line now, because you know, the, the lines can be pretty long and you don't wanna wait until that you really, really know.

And, and you can always, you know, if it gets to be your turn and you can always say, say, I can hold off a little bit or something if you're, if you're unsure, but. So, uh, Melissa, you were talking about wow, the highs and lows and of course, you know, um, the impermanence, I think is a really interesting way to, to look at this because it definitely is impermanent, but there are sometimes things like the tethered cord surgery or sometimes we find the, the right, um, you know, key to go in that lock to actually improve someone's symptoms.

So, you know, things can wax and wane in, in that regard, but I'm sure you've had plenty [00:14:00] of difficult chapters of, of your, your health, your life, your relationships. Um, what keeps you going during those difficult times? 

Melissa Dickinson: Well, there's several things that keep me going. Um, I, uh, run a large, um, support group for people with EDS in Georgia.

We now have 1600 members and, uh. I've been doing that for over a decade. Really? Devotedly, I put about 20 hours a week in addition to my full-time job into that community. Wow. And what really motivates me is when we started, we started with four people and very, and only four clinicians in my entire state that did any work with EDS at all.

And we had a lot of loss of life because of the poor resources in our state. And we have come so far that we now have 1600 members. We have over 200 [00:15:00] providers that work with us in the state of Georgia, despite an urgent need to keep growing care for us in the state. And when I think about how that loss of life scenario has evolved to.

People living longer, people getting better, people stabilizing earlier on in the onset of their illness. It is so motivating to see how much we've been able to change already. So that kind of, when I get stuck in my own step and I'm worried about my own health, that's one of the things I remember is how far we've already come and I believe that we can.

Even do more. Um, also I lean into my own therapy. It's been really important for me to keep up with my own therapeutic work as a therapist, um, to, you know, manage my emotional wellbeing as best I can. Uh, and also, uh, leaning into the people that I love, that love me [00:16:00] back, uh, and doing some of the sweet connection things in everyday life that are often so accessible and that we undervalue because they're so immediate.

But getting a hug, um, cuddling with my puppy Ollie, and, uh, our very feisty cat and long walks in the sunshine. And, uh, just tuning into what's working in my life can help me hold the whole scope, uh, so that I'm not only focusing on the pain and the suffering. 

Tom Query: We have a set of friends that literally, uh, and EDS is part of their relationship too.

And, uh, Melissa can be in the worst possible shape. I mean bad. And the same thing with Jules. And so we'll say we're coming in, it's, it's, it's in coming and it ain't good. And they don't care. And we [00:17:00] can be in our worst places and get together. They may still be wearing their pajamas. That's okay. 

Dr. Linda Bluestein: Mm-hmm.

Melissa Dickinson: Mm-hmm. We have definitely had pajama hangouts with other edss where we just honor that we all need connection and support and make it easy, uh, and relatable. 

Dr. Linda Bluestein: That's amazing. And I love how you're talking about appreciating the small things because I think it can be very easy for us to. Forget about the small things.

And again, whether you have EDS or not, so much of this is relevant for everybody, right? But it's especially important when we have something that is so complex and affects so many different parts of our body. And, um, so I think that's, that's great that you have other people in your network that you can, uh, rely on, lean on when you, when you need to.

Mm-hmm. We're very fortunate that way. Mm-hmm. And I'm sure there's people listening right now who are saying, now, wait a minute, how does she work [00:18:00] full time? And also, I know I'm gonna get questions about that. 

Tom Query: And, and she is an anomaly, uh, in the group, in the larger group, she's, there's not that many people that, uh, work like she does.

Melissa Dickinson: So, uh, I have several things that worked in my favor to make this possible that I'm aware are not accessible to most people in my position. Uh, so first and foremost, I got clear early on that the family had a mystery illness. So I was headed toward private practice where I could own myself as quickly as possible professionally.

Mm-hmm. And that ended up being a good move, um, up to, and even including making sure that I had an accessible building to work from long term. So putting those things in place early when I was very disabled, couldn't walk well, um, were, uh, incredibly important to me. Being able to have options [00:19:00] like this. I would never be pulling this off successfully without the support of a partner who's in the same field and can back me up and physically help me out when I run into scenarios that are, um, getting in the way of me being able to do what I need to do.

So, uh, it, it makes me look like I have it all together. This is a carefully crafted image that I openly disclose to all of my clients. Uh, what's really true in the background of this, 'cause they do support a lot of Ed Sers professionally, and I don't want them to get the idea that this is, um, I'm just that strong or I'm just made different.

I'm not, I've got all the same problems everybody else does. The difference is I have a higher level of support at home and at work than average, and I have a lot of personal control over how my day goes, and I [00:20:00] plan it very. Thoughtfully, uh, up to and including taking meds in between sessions and doing things that I need to do to upkeep my body openly, uh, and, and normalizing it in front of clients.

So that's, uh, why this is working. 

Tom Query: Just recently, she actually had to do all of her sessions, uh, laying down on her couch. And, uh, I jokingly said, we're just going back to the Freudian era. We're gonna, we're gonna go back and have people lay down, uh, and do the sessions. 

Melissa Dickinson: Said, I'm doing it in reverse 

Dr. Linda Bluestein: where I'm laying right.

I was gonna say, you're gonna lay down and then are, and then you gonna have the client also lay down, so you're both laying down and. 

Melissa Dickinson: Uh, but, um, because I treat a lot of chronic illness people, whether or not they have EDS, uh, it also makes it easier for them to be themselves when they show up, be 

Tom Query: being able to control the environment.

Our, our building is gluten-free. Uh, it is [00:21:00] handicapped accessible. It is, uh, uh, we don't use any cleaners that can take you out. We don't have scented candles. Controlling the environment is really, really important for Melissa's wellbeing. 

Dr. Linda Bluestein: I wanna back up. You said your building is gluten-free.

Melissa Dickinson: We, uh, I, I have, uh, my mast cell activation disorder is a little bit over the top. Uh, it's a, probably at a higher level than a lot of srs and severity, uh, gluten airborne can put me into anaphylaxis, so I. Refuse to give up my right to be in the world. So I just arranged a world where I could be very free to be who I am, and it inadvertently made it very safe for other people like me to be here.

And I've got a really like loyal group of other therapists here that have no [00:22:00] problem with the fact that I made a little bit differently, and it's ended up being a wonderful, uh, setup for all of us. 

Dr. Linda Bluestein: That, that's great. I literally recorded a solo episode recently, and I talked about fragrances and how, you know, I had a patient who was on a plane and she said the flight attendant walked past her and didn't notice anything out of the ordinary.

But then like 10 minutes later, she comes out of the bathroom just, just like wreaking of this perfume. And she had an anaphylactic attack in the air, in the plane. Fortunately she has an EpiPen and she was able to, you know, uh, self-medicate. But, and, and it worked and it worked in her, in her case. But, um, we know that for a lot of people that is a huge problem.

So it's, I'm so happy for you that you were able to, to work that out. That's great. 

Tom Query: Particularly with doctor's offices. So many of them use so many fragrances. Right. And we, and, uh, it's, I just, they just have to learn this. 

Dr. Linda Bluestein: [00:23:00] Absolutely. And we met in 2017 for the first time in person at the EDS Society Conference in Las Vegas, and then again in 2018 at the EDS Society Conference in Baltimore.

So without revealing any like particulars of Melissa's health, I can say that, that uh, she is not exaggerating anything. So, yeah. 

Tom Query: Uh, and for that Baltimore one, we couldn't find any restaurants around that could meet her criteria. Uh, and so we ordered from, uh, had shipped in a refrigerator and a, and a, uh, microwave, one burner thing so that we could make our own food in the world.

'cause there was just no way. Las Vegas was bad too. Really? 

Dr. Linda Bluestein: Yeah. I'm sure Las Vegas was also bad. Yeah. Yeah. Wow. Incredible. Yeah. I'll never forget that first time I met you guys, um, at a, at a dinner, and it was just like, I was like, oh my gosh, these are two really amazing people. I, I need to figure out how to spend more time with them.[00:24:00] 

So, felt 

Tom Query: the same about you. 

Dr. Linda Bluestein: Oh, definitely. Oh, thank you. Okay. And so, Tom, what have been the toughest issues and barriers regarding your relationship and EDS? 

Tom Query: Uh, it, it, um, it hasn't been easy on either of us with all of the challenges, uh, and, uh, particularly when it comes to, uh, intimacy and those kind of things.

We've had to find workarounds 

Dr. Linda Bluestein: mm-hmm. 

Tom Query: Uh, to make all that work for us. And it's very limited. But, and I don't say that and, uh, I, I'm not, uh, bitter about it at all. It just is what it is. We keep trying to find ways to, uh, add little things to our work, uh, to what we do with each other. I think both of us truly delight in each other most of the time and, uh, we're both really strange and weird.

And [00:25:00] so we kind of have that, um, there we're both extremely stubborn and if, if we're like two mules on one lane bridge, it is, uh, it is really tough. Somebody's gonna have to move. Uh, and, uh, we, we don't listen to each other real well all the time. We found out later that it has to do with her neurodiversity and I will say blue and she will hear orange and it just is the way it is.

Um, and, uh, one of the things Melissa did early on was, uh, and she got this from, I think her therapist at that time where we named EDS Ellers Danlos Ed. And Ed is our uninvited unwelcome guest who is in our home all the freaking time. And, uh, and, and so we, we blame Ed. We cuss ed. We, you know, we go, dammit.

You know, ed, excuse me. I dunno if you can say that, but, uh, 

Dr. Linda Bluestein: ed, you [00:26:00] can say that It's okay. Okay. Alright. Absolutely. Uh, 

Tom Query: uh, so, and then with our conflicts, we are not unlike any other couple, particularly people think therapists have it all together. And please do not believe that. No, uh, not at all. We do that.

There is a reason why we're therapists. My, my joke is that I became a therapist. Therapist because it was the only way I could afford afford it. And, uh, we, we, so that's not it, but we have a lot of support and help and, um, it is not all pretty and easy and we have very difficult times, just like every other couple.

And, uh, we get stuck and, um, and we try to find ways of, of getting over those, uh, stuck places with each other. Melissa, you may wanna tell more. 

Melissa Dickinson: I loved your description. That made me really, uh, giggle inside. Uh, we're definitely like every other couple and that we're super normal. We have [00:27:00] the usual fights that every couple has where we're struggling to hear each other and understand where we're coming from.

We did learn that it was very neurodivergent along the way, uh, and that we were miscoding each other. So we've had this fun ride in the past couple of years where we're trying to decode ourselves for each other because it's not automatic and we cannot assume that we're understanding where each other is coming from.

In fact, the first. That. I mean, if we assume at all, we're probably way off course. So that's been a real education to go back and unpack what we thought we knew about each other and correct, um, assumptions and around intimacy. Um, it has been, I like to think of this as, uh, kind of an ever evolving journey.

We both have training in sex therapy, so we get to start with a leg up in terms of creativity and open-mindedness. 

Tom Query: [00:28:00] Oh my god.

Melissa Dickinson: Oh, that was a, that was an interesting choice. 

Tom Query: Am I using a cuss word? It's just been taken away. You did it. Okay. 

Melissa Dickinson: That, that was, 

Dr. Linda Bluestein: that was perfect. That was perfect. That was beautiful. 

Melissa Dickinson: I like to treat it as an adventure and whenever we're trying to be close with each other, um, we're usually really motivated.

I'll sort of do a really quick sketch for Tom or on, this is like my body status right here. Here's what I feel like I'm up for. Here's what I don't think will work today with how things are playing out in my body. And I treat it as an adventure that's never going to be the same. It doesn't matter. Um.

What's happening in our lives. This part of our lives is constantly evolving 'cause your body's just not in the same place every day. Mm-hmm. And it's worth it to be open-minded and, and see what's [00:29:00] possible and, uh, has allowed us to be together more than we would've otherwise. 

Tom Query: I I was gonna say also that with a lot of, uh, people with their histories and backgrounds, uh, if there is any kind of sexual abuse or abuse in general and backgrounds that affects all of that, just like it does all of us.

Yeah. Uh, we have said that almost every time we get together intimately. It's almost like the first time because it's never the same. It is always trying to work around something, uh, that goes on. And, um, and just like with normal couples, uh, the, the, the biggies, you know, are finances and laws and I've forgotten what else, but fi finances, uh, are a, a big thing That is because it.

Ed takes a huge hit on everything about how our life works and, uh, we both worry about being able to work long enough to keep paying for this kind of thing. So that's just like every other couple. We'll have fights over money, we'll [00:30:00] have fights over in laws, um, and, uh, it just, it's just normal. 

Dr. Linda Bluestein: Okay. Well, we are going to take a quick break and when we come back we're gonna talk more about this intimacy and dealing with the tough times and how you get your needs met and, uh, all kinds of other topics.

But we're gonna take a quick break. We'll be right back.

This episode of the Bendy Bodies Podcast is brought to you by EDS guardians, paying it forward in the Ehlers Danlos syndromes community patient to patient for the common good. I am proud to serve on the inaugural Board of directors for EDS Guardians, a small charity with a big mission and a big heart.

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Okay, we are back with Melissa and Tom and, uh, getting some good chuckles, uh, here over the leg up. Uh, comment. Love that. So in terms of intimacy, I'm sure there's some people listening to this and they're thinking, oh my gosh, this all sounds great, but I. I don't have sex therapy as part of my background.

I've never talked with my partner, even though we've been together for a really long time. We've never actually talked about sex. We've never talked about intimacy in a way that is actually productive or can actually open the door to other types of, um, interactions. So I've, I've interviewed a couple [00:32:00] urologists lately on this show, and, um, so we've been talking about, you know, uh, what is it?

It's PIV Penis in vagina sex. Like, people often think when they think of sex, they think of, that's all they think of, right? Mm-hmm. So, but there's obviously lots of other ways to be intimate. So if somebody's having difficulty bringing this up or having this kind of conversation with their partner, do you have some tips for, uh, ways to start these conversations?

Melissa Dickinson: I can maybe start us off here. Uh, one of the things that I think really forms a good basis for conversations about sex, and I know a lot of people find themselves nervous entering into those conversations is going back to basics like consent. If you can sit down with a potential partner or a current partner and have a good quality consent, uh, conversation about what you feel safe and comfortable including in intimacy with [00:33:00] each other, that.

Often leads to being able to have other more sensitive conversations when other issues arise. So there's really great information on social media and with a quick Googling on how to have great consent conversations around sexuality with a partner. And if you can start there, it opens the door for having more detailed and intuitive conversations with each other over a time about areas of sex that are opening up for you or issues that are coming up as part of the process.

Tom, I'm sure you have some to add here. 

Tom Query: Well, I, the, the thing I wanna say right off the front is I actually don't think we're any different than chronically normal people, uh, with this. I think that I, I know very few couples that actually know how to have a conversation about sex at all, and they do reduce it to just, um, uh, PIV.

That's all they think about. And [00:34:00] there's all the census, uh, that we can, uh, use. And you start finding out what it is that works for you. I'm sure I, I'll have to dig it up. There's actually a, a, uh, uh, inventory that talks about, would you like this? Would you like this? Would you like this? Would you be interested?

Absolutely not. Or curious. And, um, I think something like that to sit down and have, uh, a conversation with somebody about what is okay. This is also one of the places where there's a lot of loss and it is okay to, um, to grieve that together and, uh, and find ways to, that may be the entryway to talk about sexual stuff is the, about the losses, uh, and about what you can't do.

And it is true. We, we have. Very simple things that we can use. Uh, we are not swinging from the rafters. We are not doing strange stuff at all because we can't. 

Dr. Linda Bluestein: Right. 

Tom Query: And, [00:35:00] um, so I, I think people realizing that this is not just about having illness. I've worked with disability populations, not eed s uh, in my career, and this was always one of the workshop topics is how do you, uh, have sex as a, uh, transgender person?

How do you have sex as a person with, uh, with developmental disabilities? It is, it is in every community I've ever worked at, including church, uh, that is, uh, nobody talks about it. And we have to, and, and I've learned that people in general are very open to talking about it if they don't feel like they're gonna be judged in any way.

Dr. Linda Bluestein: Mm-hmm. Mm-hmm. 

Tom Query: And if that can be created, uh, a sense of, I, I am not gonna get mad at you, but please tell me what works and what doesn't and what you wish for. One things that, I don't know, almost any couples that do talk about their fantasies, almost no one talks about their fantasies. It's taboo. Mm-hmm.

And, but they can really give us some [00:36:00] hints at what we might be able to, uh, use as modifications to make things work. 

Melissa Dickinson: Also, um, I wanted to include really quickly, for those of you that don't have sex therapy backgrounds, there's a wonderful online resource that is very affordable, and most of the services are free called O School.

I highly recommend it. They, uh, make it really easy and relatable to watch short videos, to get really good information about sexuality and to dispel common myths that end up hurting us when we're trying to have conversations with a lover. So if you just want a place to start, Google O School, dig around a little bit, get yourself some access to information that's pretty high quality and easy to understand.

Dr. Linda Bluestein: I love that. And we will definitely add a link to that in the, in the show notes so people can, can access that. Um, I also have to say that I, I was chuckling Tom, as you were talking about Ed, [00:37:00] because I'm married to a urologist and not that, not that it would be different otherwise, but when I saw that you had put in some, a couple of questions and had Ed, I, I thought of Ed and I thought, oh, they're just referring to EDS as ed.

Tom Query: Nope. We literally mean that Uhhuh, it's our ringing when Melissa says Eds to people that that actually pops up pretty quickly. They think that's what we're talking about, Uhhuh. And that gets you into a conversation real quick about stuff, so, 

Dr. Linda Bluestein: right, right. Oh, that's funny. When, when you said that, I was like, oh, okay.

That's why he used Ed or Ed. Okay. That's funny. That's funny. Um. There was some submitted questions for, for you, Tom, um, and one of them was, we have heard you say that living with someone with EDS is both difficult and rewarding. What do you mean by that? 

Tom Query: Uh, what's difficult and rewarding? What is difficult, uh, I said [00:38:00] earlier, and that is watching her in pain and not being able to do anything about it.

It is so hard and I, we try to keep our repertoire up about, she'll often say, because she gets brain fog and can't think clearly, she'll say, please tell me what I do with this and luck. That's one of the things I feel like I can do is remind her of the things that we have learned over the years. Um, the, the other big difficulty has been able to find, uh, medical help people that actually will talk to her, believe her.

Early on, she was not having any success at all with any of the doctors she was talking to, and she started taking me with her. To all of her doctor's appointment. And it just having me, this old cis white male sitting in the corner, um, and gave her credibility. It just infuriates me. But she, she, uh, or they would look, she'd say something and they'd [00:39:00] look at me and I'd go, yep, that's true.

Dr. Linda Bluestein: Mm-hmm. 

Tom Query: And it just changed everything. So that has been a very frustrating part, being able to find, help, uh, them believe her and move on, those kind of things. I, um, the, the thing I love most being around Melissa, is how much, uh, I enjoy her. She's an extraordinarily intelligent and strong human who has this warrior spirit.

I say to her all the time, I couldn't do it. I could not take the amount of stuff that you're and keep going on, and I'm really mean that, uh, and so I look at her with awe and realizing. The difficulties, uh, that she's having all the time. The difficulty for me, uh, has to do with the caregiving. And that is not being able to step away, uh, at any given time, to take a break, to go to a movie, to have dinner with a friend, to just go [00:40:00] walk around by myself.

I have a very difficult time saying, uh, I need time out. I need time out for me. 

Dr. Linda Bluestein: Mm-hmm. 

Tom Query: And when the caregivers get together, that's one of our refrains is that we are not good at that. And so a lot of our meetings are about trying to figure out a way to do that better. Uh, and so asking for what I need with watching a person in the condition she's in, that's hard.

Really hard. 

Dr. Linda Bluestein: Yeah. And I've, that was one of my questions that, we'll, we'll go ahead and get to next. Um, how you do balance, each of you getting your needs met, because of course you both have needs. 

Tom Query: I, I, when I thought about that early on, the first thing I wrote was, uh, we don't, we don't know yet. We're still working on that, on how to get that balance.

'cause Melissa doesn't get enough time alone either, and enough time with friends and enough time neither of us get what we need. And Ed again, [00:41:00] uh, makes it so hard for us to be able to take time for ourselves and do that. And I, and I guess that's what I'm saying is the individual time we both need.

That's really hard because we're, we actually work in the same building. We're, you know, we're together, uh, uh, almost all the time and 80% of the time I love that. But both of us, I think would like some time, uh, doing other things. 

Dr. Linda Bluestein: What about you, Melissa? What do you think are some keys to. Getting both of your needs met?

Melissa Dickinson: Well, it's definitely, uh, something that we're both trying to get better at. Mm-hmm. Um, but I'm so conscious that as a caregiver, that he has trouble stepping away that I try to do what I can to carve out some space for him to get a breather. Uh, I think a lot of us who have a loving relationship with a partner who supports us with caregiving, uh, offerings, we sort of have this attunement to when they're getting [00:42:00] really, really fried or burned out.

And so one of the things that I try to do for him is ask him if he is gonna need a nap this weekend, can we carve out that space, um, when he has things scheduled that are, uh, for him? Support groups that he's a part of independently for his own work or, um, the group of guys that he meets with every month.

Some of those things that are really important to him, being well-rounded and having his needs and that I try to protect those spots as best I can so that he can have those opportunities. Uh, it's a little bit more complicated for me. Uh, working full-time has a cost, uh, for me as an ED ser, and that I need at least one day each weekend to have a lot of recovery time.

Mm-hmm. And I notice that when I don't give myself enough recovery time that I start. Digging a hole. Mm-hmm. So I have to factor that in [00:43:00] on some level and that ends up being my frontline self-care for my, for me. But that also means that I'm trying to figure out how to balance my family, friends and those relationships.

And that gets really hard to work in and takes a lot of additional support to pull off. So we don't always get there, but it's a high priority and Tom really supports me in getting access to those things when I set them up. 

Tom Query: So one of the points of that is that it almost can never be spontaneous. Uh, we have to plan and those plans can get torched by Ed.

Uh, but we try to book out where we're gonna be doing some of these kind of things. I think a really good example, Melissa, of this is us is, is food. Um, I end up being the person who primarily cooks, uh, it started that way because she can't lift anything over two or three pounds. Without dislocating it. So, and then you [00:44:00] can't bend down to do the dishwasher and you can't do this.

You know, those, those are super practical things. Uh, going to the grocery store was almost impossible early on. Mm-hmm. For her. And so we ended up, uh, I ended up doing that. Now that's very weary. Some I don't regret. I, I'm not upset about it, but if cooking every night, as most partners know, it can be very difficult.

And she's lately been really trying to change our kitchen. Uh, we bought a dishwasher that was higher up that she can reach into. She's bought pans that she can lift. Uh, she's looking for recipes that she can create herself without a lot of stuff. And she's, she's trying to give me a night off a week or two nights off a week.

Mm-hmm. That is very loving to me. Mm-hmm. And, um, I think it also helps her, because I don't think she likes being cooked for all the time. Uh, may, maybe I could be a better cook, but I don't think that's all of what that's about. I think she wants some of her life back. 

Dr. Linda Bluestein: [00:45:00] Mm-hmm. Mm-hmm. 

Melissa Dickinson: I, um, actually Tom's an excellent cook.

He doesn't give himself credit. It's really delicious food. Uh, but I think there's something to be said for having agency in your own life. So whenever I have an opportunity to start investing in recapturing a space, even if it's just a small one, it really feels worth my time to put in the planning and the thought to give it a go.

And I've had a couple of successes lately and some of the things that I researched and came up with have been, um, promising and working for me. So we're a little optimistic that I might be able to get more agency in the kitchen. 

Tom Query: Lemme take two, two more seconds. To be really honest with everybody, is that.

Her, uh, gut doesn't work. She has really poor gut motility and she doesn't get, uh, nutrition out of normal food. Uh, so two of her meals in a day have to be a, uh, an all [00:46:00] sole source, uh, shake. Um, that is what she, uh, 'cause I can't, we tried, I can't cook food that gets into her system good enough. Mm-hmm. So this one meal a night, usually dinner that I'm cooking, uh, is, is she doesn't actually get all the benefit out of it either.

Um, and sometimes it really causes problems. And my joke is she's allergic to everything but air and water. And when you get in into food with that, it's really hard. And then it changes. Ed comes in. Yep, yep. Takes it away. You know, she's, she's Italian by background. She can't do cheese and milk and, you know, it's crazy.

Anyway. 

Melissa Dickinson: Yes, that is a part of our journey. So I'm learning how to cook for myself because I want to experience the pleasure of flavors. And to me, anytime that you give yourself access to pleasure as someone with chronic illness and a lot of pain, it's a win. And I [00:47:00] love tasting things that are delicious, whether or not they nourish me.

I make very sure that I use quality medical nutrition recommended by my E-E-D-S-G-I doc to keep me going and resourced. And it has been transformative. Um, but, uh, it, I don't get nourished by regular food because my g uh, my, my, uh. GI system doesn't absorb well unless things are already pre broken down.

Mm-hmm. Uh, it's made a big difference in my life and I feel like the flavors that are all around me are worth it. And, uh, I get to experience joy just like anyone else when I taste something that's really wonderful. So if you are ever in a position like I am in, uh, don't give up on flavor. Make sure you give yourself some pleasure, whether or not it's the way you sustain yourself.

And 

Tom Query: that's intimacy, us figuring that out together. 

Dr. Linda Bluestein: Yeah, I that's a great, a great, uh, [00:48:00] analogy there, there as well. And I wanna come back to the, uh, neurodivergence that was mentioned at one point, and also the going to appointments and having someone else there. I will say, having been on both sides of the equation, you know, being a physician and seeing patients, but also, um, you know, being a patient myself, I, I think that part of that too is if you have a person that comes in just by themselves, you're just seeing that one person and you're not seeing them as part of a unit of some sort.

So if they come in with a partner or a friend, or. Some other, some other, uh, person, it gives you more context. So I think that, um, you know, even if you're listening to this and you're like, but I don't have a tom to take with me to my appointments, you know, if you have someone else for a second set of ears.

Um, and, and yes, there's definitely some judging and that goes on and, uh, so, so that's, you know, challenging there. But, but I think that having that second person can often be really helpful. And when it comes to the [00:49:00] neurodivergence, uh, piece, um, do either of you have tips? Because I'm sure a lot of people too listening to this are gonna say, well, my spouse is neurodivergent and I have difficulty figuring out how to communicate with them because of that.

Tom Query: I'm still figuring this one out. We literally only learned this in the last year, and it has completely changed how I look at Melissa. Believe it or not, I, I have so much more compassion, whereas before I just thought she was being a problem. It actually wasn't, it actually was some of this. And so it is given me another frame of reference to look at her.

Uh, we're both doing a lot of study on, uh, particularly, you know, high functioning autistic women, uh, which we believe she fits into. And, um, uh, so I think I'm still in a learning curve on it, but it has made a huge difference in terms of some of our fights and, uh, some of the ways we get out of it because I will say, [00:50:00] uh, say, well, she, here's one little example.

She'll start repeating things over and over and over again, and I'm going, I heard you. Uh, but what she is needing from that is something, uh, for me to, to give her compassion, empathy, uh, a sense of understanding it before she can close that. And so those fights would go on and on and on because I wasn't being able to give her back and she'd say it again.

Um, so I, that is just a mini example of that, Melissa. 

Melissa Dickinson: Yeah. Oh, it's been such an interesting journey with this. Um, so I, um, am autistic and have a DHD, so I'm that combo so common in the EDS community. Uh, I am on the high functioning side. I also have a, another form of neurodivergence and that my IQ is.

Remarkable in some ways. And, uh, [00:51:00] that also has like a degree of separation that I have to navigate with other humans to make sure that, uh, I'm getting heard correctly and understood. So my tendency as someone is neurodiverse is to be very, very direct. And I know in our culture, especially in the south, direct is not always valued, but for clarity.

Mm-hmm for clarity. It feels really important to me to be very factual in my communication with other people. And I'm aware that they generally, others that are not neurodiverse want a lot of like softness and, uh, indirect statements. Yes. Oh, feelings and emotions. As long as they're not directly stated, like saying, as a neurodiverse person, if I say I am sad, um, people will not believe me, even though that is a very true statement.

Mm-hmm. Or if I say [00:52:00] I am mad, they'll, they'll, you know, it's just a, something about being neurodiverse and saying the same thing another person would say doesn't go the same in a room, especially in, um, the Southeast where we live. 

Tom Query: Right. Bless her heart. 

Melissa Dickinson: Yes. Yes. A lot of that. Um, but, uh, I'm very educated in the things that I know about and I have some, um.

Once Tom started going with me to appointments, it was very helpful because all he had to say in front of a new provider is, yes, I've witnessed that. I have credibility with all of those providers now, and I have a great dialogue with all of them now. We have long-term trusting relationships with these providers where we have latitude to explore new ideas together.

And it just took, um, unfortunately in the Southeast, uh, another voice to just echo that I was legitimate and as soon as I was legitimized, I [00:53:00] was able to advocate for myself pretty well. Uh, but, uh, and, and I think that it's been interesting that the, my work, uh, drew a lot of autistic and a DHD people to me in addition to EDS.

Mm-hmm. And it took me having a practice that was 80% neurodiverse before I started to catch on 

Tom Query: that maybe you were. 

Melissa Dickinson: But perhaps I was, and further further education and information and conversations with other providers were really, um, enlightening and we now understand a lot more, um, about kind of how I experience the world, which is not always the same as mm-hmm.

The way other people experience it. So, uh, I like being neurodiverse, I've a lifelong nerd, uh, and make my interest, uh, make me very happy so I can really be comfortable on my [00:54:00] own and enjoy a lot of solo activities. And I, that also means a lot of my friends in the EDS community are neurodiverse, and we have a wonderful time being our weird little selves together.

And it's delightful. 

Tom Query: We have watched every episode of all the versions of Star Trek, all of them.

That's true. 

Dr. Linda Bluestein: Awesome. Okay, well, we are gonna have to wrap up soon, but I would like to give you some rapid fire questions that some of the listeners, um, submitted because some of them are very interesting. And I really appreciate people submitting these questions because I know that they're, they're opening themselves up and, um, you know, I think these are like really important.

So the first question is, uh, I'm gonna direct this one to Tom. So the first question is, what are some tips for air quotes? Training a spouse to be a caregiver? Mine is awesome, but some [00:55:00] people report that their loved loved ones treat them like they're lazy or dramatic. 

Tom Query: I, I think I said in our caregivers group, when we have a new person come in, that is a, a lot of them either come in saying, I've lost who I loved, or that they're lazy and, and whatever.

Dr. Linda Bluestein: Mm-hmm. And 

Tom Query: so, um. First thing I would say is that you've gotta get 'em to a caregivers group, uh, somewhere. And somehow the, the national EDS, uh, conference has a caregiver that I've been able to lead a couple times, uh mm-hmm. The caregivers group. And there's like 200 people in there when we meet at that.

Uh, and uh, so I think the education piece is the first bit of training. Um, you really may need, uh, a therapist type person to help you navigate through that. Somebody that understands this. Mm-hmm. Which is hard to find. And, um, I'm hoping that you've chosen somebody that is [00:56:00] open to learning and changing and, and coming at it new.

Like I said, every day is different for us. It is never the same way any given day. And, uh, so we have to roll and just. Try to kick Ed's butt as best we can. And even that little thing about Ed, it it, it's helpful to give that to somebody and realize that it's a third party. It's not your partner. Your partner is not the illness, your partner is not the problem.

And um, I think just that basic understanding going into it, and then we can get creative with problem solving. 

Dr. Linda Bluestein: Sounds good. Okay. I like it. Uh, this question is for you, Melissa. What can you do when you worry that your partner will leave you for someone healthy? That your limitations are too much or that no one would be interested in you?

Melissa Dickinson: First of all, I have a lot of empathy for the person that is struggling with this question right now. Uh, I think it comes up a [00:57:00] lot, uh, I wanna say to that human, it's not you that is dramatic or the problem, it's the circumstances that you're in. And it's a very normal and relatable worry to have concerns that other people might judge you unfairly for things that are designed as a part of you that you can't change.

Um, what I have, um, come to believe over time is that there. Are a lot of people in this world that can love into really difficult and challenging circumstances. It's often our inability to believe that that's possible. That holds us back from seeing those people in our lives. And, uh, if you are having trouble connecting with a partner at this time, I encourage you to open up to the friends in your life and family members and nurture those relationships and treat them as just as sacred and [00:58:00] important as other romantic or partner style relationships, because that's the foundation of all good relationships.

And if you spend time investing in those areas, then you may be able to see the people that can love you just as you are in the most challenging moments of your life and really feel good about being there with you. 

Tom Query: We, we were talking about this not too long ago, and one of the things we were talking about is where you.

What, what pond you fish in, where you find people, uh, is so critically important. And finding, uh, people that are based on interests, uh, is so much better than going through the swiping thing on the phone with, with apps. 

Dr. Linda Bluestein: Okay, so this next question is gonna be from Melissa, and this might be similar to what I just asked, so, so we can skip through it pretty quickly if it, if it is.

I got sick as a young teen and have been mostly house bound since it has been 27 years. I've never had any relationships or been on a date. It makes me really [00:59:00] embarrassed. Do you have any advice? 

Melissa Dickinson: I, uh, really care that this person is experiencing some embarrassment around, uh, a dynamic that they may not have full control over.

So I just wanna say to you that you are very legitimate and have a rich dimensional life no matter. Uh, if you have ever had a date or someone has ever asked you out, you are a fully fledged person. Uh, the people in your life that you love are, um, and spend time with are valuable relationships. So, uh, just wanna kind of focus on that.

And if you really desire partnership and that has not come together for you, sitting down with a therapist that offers low cost services and is accessible to you can be a great way to start investigating a soft launch. Um, developing the skills to build competence so that you can. Really show who you are to a person that you're [01:00:00] interested in getting to know better.

So if you find yourself in that spot, uh, I really encourage you to open up to a relationship therapist who has some real skills development and their process. Interview them. And if it feels good, get started there. 'cause once you have a real healthy relationship with a good therapist, you're probably ready for the next step.

Dr. Linda Bluestein: Okay, this last question is for Tom. My husband and I have been together since high school now 29 years. We have always been a 50 50 couple. We both worked and had split duties at home in 2019. I lost my career and couldn't work for a few years. I just took over duties at home. This worked wonderfully.

However, in the last 18 months since being hit with even more symptoms and now being fully disabled, this has completely changed our relationship dynamics. Now it's 90 10 with my husband doing 90% of everything plus overtime at work and horrific out of pocket. Um, expenses. Not to mention [01:01:00] the impact becoming disabled has had in the bedroom.

We're lucky 'cause we have a strong foundation, but we're struggling to find our places in this new dynamic. I struggled to ask for help. He obviously can't read my mind. Sometimes I don't even know what I need or have the ability in the moment to speak. How have you dealt with this? 

Tom Query: Oh, that is such a good question.

And the first thing I wanna say is it sounds like you have a partner who is still with you. And that means something sometimes. All the fun can get sucked out of life by this stuff that we're having to go through. And if, if he or she is committed to you, uh, that is 90% of the issue. The rest of it is really technique and finding ways to communicate with each other.

And for you to say, just like we were talking about food for Melissa was saying, I have got to do, I, I I can't do this. I need to do something differently. And as combined, see it as a problem that we're both working on. And the communication, I think, [01:02:00] has to do with the whole level of everything you talked about.

Uh, if you need help doing that, get with a therapist. Uh, and that can very gently help you guys talk to each other. It's, it's actually as a, a person who works with people, it's not that hard to do. To get them to actually start talking about what they really want from each other. It is hard. It, it is, uh, especially with sexual stuff, it's really hard to talk about these things.

And so getting some help, um, I don't recommend for most, uh, cis male saying, would you listen to this podcast or read this book? That doesn't seem to work real well for a lot of them. But getting, uh, again, kind of a, a inventory or questionnaire or something that says, how do you feel about this? How do you feel about that?

Just to start the conversation would be really, uh, helpful. I know Melissa's her dream, her whole dream right now is to create an EDS [01:03:00] center for Georgia. Uh, that would include all of these elements, uh, in one place where they could get to. And, uh, I, I think that, uh, along with nutrition and some other stuff as well as the medical, um, are things that are really needed in communities.

Dr. Linda Bluestein: Yeah. And I was gonna ask about, uh, we're, we're gonna get to our hypermobility hack in just a minute. And, but I did wanna ask if either of you have some exciting projects that you're working on, um, things that you're excited about and wanna share with the listeners. 

Melissa Dickinson: Uh, well, we are very excited to launch, um, a, uh, we have a really big goal in the state of Georgia.

There is an urgent need to have our own center of care for EDS in the state. We've tried to partner with other hospitals and systems in order to get that going. And we're. We're not received well at that time, and we've done a [01:04:00] lot of research and planning over the past decade, and we think we have a model that works that's ready to go, and we just need donations to fund it.

So we have a 5 0 1 C that is well established. It's exclusive purpose is to raise funds for an EDS Center of Care in the state of Georgia to serve our entire community. We have a lot of integrity around this goal because we have been serving this community with free services. For all 1600 members for over a decade.

Mm-hmm. And have had really good outcome changes in terms of the health and wellbeing of our members. So if we can get quality services to them that don't take two years in our own state, a waiting list to get in for, then we can really change the scope of healthcare for Ed Sers in Georgia. So we formed a nonprofit called Wellspring Nonprofit Corporation.

Our website is Wellspring Giving. You can learn more, uh uh, it's wellspring [01:05:00] giving.org. You can learn more about us there and the work that we've already done successfully and the goals that we have to fund a clinic in Atlanta, Georgia for all of us. So, um, if anything that you can do, even if you just share about our journey or if you would like to donate, uh, you would.

Be participating in saving lives. 'cause our track record so far has been to go from losing a lot of edss due to poor healthcare outcomes in Georgia, to being able to change that where a lot of people are living and thriving. And now we just wanna get services timely and sooner in the course of illness so that everybody's got a shot at a happy, healthy journey long-term with EDS.

So if you can help us deliver on that dream, just check out our website and learn a little more about us and see how you can participate. That's, 

Dr. Linda Bluestein: that's wonderful. And I will definitely put that link in the show notes. And as I mentioned [01:06:00] earlier, I've, I've known both of you since 2017 and so I have complete faith that you are working to put something together really, really amazing, um, that's gonna really benefit a lot of people.

So I think that's a, sounds like a wonderful, wonderful cause. So. 

Melissa Dickinson: Thank you so much. We actually already have two clinicians ready to join the dream and dive in. So I think we have reasons for optimism. 

Dr. Linda Bluestein: That's great. That's great. And we always end every episode with a hypermobility hack. And in this case, I would like for us to, uh, for each of you to give us a hypermobility hack.

Um, Tom, would you like to go first? 

Tom Query: Uh, you know, talking about these relationships and, and caregivers, I really think, uh, trying to get some people together to have this same conversation we've had during this hour is really critically important. Uh, COVID took a whack at us and we [01:07:00] used to have in-person meetings, uh, and we were able to kind of separate off into little groups to talk about some of this stuff.

Mm-hmm. We have, we're just now getting back to that and, um, uh, I'm looking forward to that. 'cause that is really where we, we caught a lot of the relational problems having. I also ha have, uh, uh, this month I had another caregiver say, I need to talk because I'm not doing okay. I'm, I'm sinking, I'm struggling, and I'm not being the person I want to be.

And we've been, we've been doing some side talks, so finding people that are, uh, have the information or data you need, that's one. 

Melissa Dickinson: Mine is a little bit more pragmatic. So my hypermobility hack is, uh, I like to be out in the world despite having a lot of complicated body stuff like many Ed Sers do. So I have a go bag that is always ready for a potential adventure that could come up so that if I do have the luxury of being spontaneous that day, I can say yes.[01:08:00] 

Uh, it involves a rolly bag with a small little bag in between that has all of my meds that I might possibly need in a day. The ability to carry hydration with me and the ability to roll it where I'm going without. Harming my shoulders and other, um, vulnerable joints in my body. I've shown it to many of my clients over the years and they're often impressed that I can just wing it so much and I'm like, here is the system that I have developed that helps me do that.

So I just, uh, wanna encourage people to have fun with developing a Go Bagg or something that has them resourced enough to have a few adventures in their life on a good day, uh, where they don't have to spend a lot of time prepping or planning ahead because they've already thought through their needs based on what they've already learned about themselves.

Dr. Linda Bluestein: And, and I think that's smart because then you're not spending that energy trying to think of what all you need. You've already done that step [01:09:00] and now you can use your spoons or whatever analogy you wanna use for the actual activity itself. So I think that sounds like a really good, uh, strategy. I like it.

Yay. Awesome. Um, where can people learn more about each of you? Melissa, do you wanna go first? 

Melissa Dickinson: Sure. Uh, there's a couple ways to learn about me. Uh, my kind of the weird convergence of all the things that I am, you can find on LinkedIn. Uh, my therapy and coaching hat. Uh, you can look me up@melissadickinson.com.

That's a really easy way to find out about my work there. And if you wanna learn about the nonprofit side of my world, that is the wellspring giving.org site that I mentioned. And if you wanna see a little bit about our external facing EDS community that is so robust in Georgia and learn about them, uh, the Georgia EDS network is easy to find on Facebook and we can provide links to that.[01:10:00] 

Dr. Linda Bluestein: Okay, great. Tom, 

Tom Query: um, tom query.com. Uh, Facebook, uh, is a good place to find me and, uh, one of my loves is photography. And I'm hoping to post some of that kind of, to get something like the, the, uh, wellspring giving.org up so I can share more of myself from that side. 

Dr. Linda Bluestein: Wonderful. Okay. Well, I really appreciate both of you taking the time.

I know that you're busy and, you know, we all have, uh, only a certain amount of energy and time and so it was so great that you took the time to chat with me. And I know that a lot of people are really going to feel inspired by this conversation and hopefully also have come away with a lot of tips for having better relationships, taking care of their, their own needs, and balancing that with the needs of, of, uh, of the other person in their house and also Ed.[01:11:00] 

Uh, so thank you so much and Linda, 

Tom Query: we, we wanna thank you for what you do. You're invaluable to the community, uh, and the amount of effort you do to try to reach people, uh, is just amazing. So thank you. 

Melissa Dickinson: Absolutely I am. I'm aware that you donate a lot of your time and energy to the community and that we're all better for it.

Thank you so much. 

Dr. Linda Bluestein: Oh, thank you. I really appreciate that.

Well, I thoroughly enjoyed chatting with Melissa and Tom. They're such an amazing couple, and I love the fact that they're both therapists, so they've worked with a lot of other people. They have this incredible background of knowledge, but also these incredible lived experiences. So I hope that you enjoyed this conversation and found it as helpful as I did.

And I wanna thank you for listening to this week's episode of the Bendy Bodies. With the Hypermobility MD Podcast, you can help us spread the word [01:12:00] about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions.

If you would like to dig deeper, you can meet with me one-on-one. Check out the available options on the services page of my website@hypermobilitymd.com. You can also find me Dr. Linda Bluestein on Instagram, Facebook, TikTok, Twitter, or LinkedIn at Hypermobility md. You can find human content by producing team at Human Content pods on TikTok.

And Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies program, disclaimer and ethics policy submission verification, and licensing terms and HIPAA release terms or reach out with any questions, please visit bendy bodies podcast.com.

Bendy Bodies podcast is a human content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies podcast.[01:13:00] 

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