74 – Crew Dog

Graphic of block text that reads "One Sick Vet" over a watercolor blue background, framed with a stylized white hexagon.

Crew Dog from One Sick Vet talks connective tissue, mast cell activation syndrome and veteran disability services.

Transcript

Brianne: I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

[guitar riff]

Drew: Hey this is associate producer Drew Maar. Before we get started, we wanted to remind you that No End In Sight has a newsletter. It’s full of updates about twitter conversations happening in our hashtag #NEISVoid, book and article recommendations about chronic illness and disability, and links to new podcast episodes and miscellaneous other media. If you are comfortably able to support our work, there are paid options available, but all core content will be free. You can take a look at previous newsletters and subscribe over at NoEndInSight.substack.com. Today we’ll be talking with Crew Dog from One Sick Vet about connective tissue, mast cell activation syndrome and veteran disability services. A few content notes for this episode: There is talk of the military throughout this episode, including a mention of the Gulf War, Desert Storm, as well as 9/11 and the ensuing wars around thirty minutes in. And Crew Dog and Brianne refer to the pandemic a few times throughout the episode, but they do not talk about COVID or lockdown very extensively in this episode. Before we start, here’s our disclaimer: This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: So I like to start just by asking people, how was your health as a kid?

Crew Dog: Which is an interesting question because like you, it’s a lot of retrospective work for me, and I would have always said that my health was excellent.

Brianne: Yeah.

Crew Dog: And I think that’s still a fairly accurate but what I’ve come to recognize is that primary parent is sort of in denial about health issues. And so they always told us that everyone in our family had excellent health.

Brianne: And that’s how you knew, Right.

Crew Dog: So I really don’t have the same history of… that some chronically ill and disabled people do of not being able to do sports or having pain that prohibited me from doing things. I was a very active child, but I now believe that I have a connective tissue issue. And that… I can look back now on incidences where I got hurt and I was in pain and adults told me, “You don’t have any broken bones. So you’re fine.”

Brianne: Right, right. So there’s no pain cause. That’s the only way pain happens.

Crew Dog: Exactly, “If it’s not a broken bone, you have no pain. Go away. Shake it off.” But I can look at a significant incident when I was in about eighth grade. And at the time, at school in PE playing basketball, I received a very severe sprain to an ankle. And, of course, we also didn’t have health care when I was a child. So there was a lot of things that we didn’t pursue care for. But it wasn’t until three, four years ago when I was working for… with a physical therapist for a different injury that I… you know, she sort of explained to me that there’s three ligaments that go across your ankle, and I’m now convinced that I ruptured one of them.

Brianne: Eugh!

Crew Dog: It was a sprain, but I think that I completely ruptured one of those ligaments. But we didn’t have healthcare. So I got an ACE bandage and crutches for a couple of weeks.

Brianne: Maybe some ice.

Crew Dog: And I spent a whole summer running and sort of trying to train my foot to go back into the correct position. Because it wanted to cheat outward. So…

Brianne: The guard rails were off.

Crew Dog: Yeah. So I was very fortunate that I was able to be very active and do everything that I wanted to do physically as a child. But I do think that I was accumulating connective tissue damage all the way along, and it was never recognized or treated.

Brianne: Yep. I can see how that would happen. Oh, scared eyes. Yeah, and that is of course, very relatable to kind of look back and go, “Oh, those might’ve been significant injuries, but I wasn’t thinking about them that way at the time time, even if I was injured for weeks at a time or a month at a time.” I feel like there’s a piece of it that’s like… yeah, when you were a kid and if the people around you think it’s not a problem, then you’re like, “Okay, I guess it’s normal to do this,” or whatever it is. Especially if your condition is genetic and the people around you also had similar experiences. Yeah. Woof. Okay. So that was growing up. You’re blissfully unaware of what might be potential damage to your connective tissue over time. Is there a time when… even in retrospect, because I know it can be hard to see these patterns when that started to change or when you started to notice either more or additional or more severe symptoms or did things happen… how did things happen?

Crew Dog: Specifically about connective tissue, it’s just been the past few years where it seems like it has just really accelerated and really become a limitation, but in between the blissful childhood ignorance and the, you know, “Pieces are falling off of me faster than I can glue them back on,” of my current existence…

Brianne: Yeah, the wheels are literally falling off of the bus now.

Crew Dog: Yes. I developed migraines.

Brianne: Okay.

Crew Dog: Right around the time that I was turning 30. And so obviously I was in the military. I had a very active, physically demanding career, separated from the military still thinking that I was fit and healthy, and then the migraines started. And the first few years it was maybe one to three headaches a year, and I didn’t recognize them as migraines.

Brianne: And were they very long?

Crew Dog: No, they would be like one evening. I would have the worst headache I’ve ever had in my life, and I really never had headaches prior to that. And I was married at that time. Still am, but I’m saying it happened after I was married.

Brianne: Yeah.

Crew Dog: And so the two of us… neither of us knew what it was.

Brianne: Right. I would imagine, especially at the beginning, it would seem like an acute fluke, like, “Oh, last night was weird, but it’s gone now.” And then the second time you might kind of be like, “Oh, I think this happened before, but it was so long ago.” And then the third time, and you were like, “Oh no, is this a pattern?”

Crew Dog: Well, and they were so infrequent in the beginning that I was like, “I don’t know why I’m getting these headaches,” but it wasn’t even to where I was seeing a pattern yet. And so I would say that my recognition of, “I’m not just a fit healthy, stereotypical abled person,” was when I had acute sudden onset vertigo.

Brianne: Oh, the worst.

Crew Dog: So I was literally sitting in the same chair that I’m sitting in right now and studying. I was doing a master’s degree and reading a book, and it felt like my brain did a cartwheel. And I just had this violent attack of vertigo.

Brianne: Yeah.

Crew Dog: But no headache. I just had what I now recognize is I just had the aura and no headache. The vertigo was severe and persistent, and so that’s when I went to a doctor cause, yay, we had military healthcare, which is better than no healthcare.

Brianne: Right, yay, access.

Crew Dog: So that’s when I went to the doctor was like, “This is really weird. And what is it?” And to their credit, they did a full barrage of tests, seeing all the specialists, neuro, ENT, getting MRIs… and so at the end of the day, they were like, “Well, we’ve ruled out the weird tumor that you can get in your ear, and we’ve ruled out this and that, and you don’t have a brain tumor and everything else.” And a lot of times migraine is a diagnosis of exclusion, so they were like, “Well, we’re diagnosing you with…” what they called at the time basilar type migraines and migraine-associated vertigo. And that was kind of it. No treatment was ever offered for the vertigo. And we started trying migraine meds, and that began the whole process of decades of trial and error and failure. So in my still early thirties was when, “Okay, now I have migraines, and I have vertigo,” and I started learning about possible triggers for migraine in the environment and in my diet and that’s when all the, “Yay, let’s mess around with things in your diet,” thing starts.

Brianne: Yeah, “Great news. You’re about to mess with your diet all the time and never stop thinking about it.”

Crew Dog: “For the rest of your life!”

Brianne: Yeah, because it might make your health a little bit better, or not, but it’s your only option.

Crew Dog: Right. Right. It’s one of the only things you can control.

Brianne: Yeah.

Crew Dog: Yeah.

Brianne: And were you still in school at that time?

Crew Dog: Yes. Yes. In fact, I took my comprehensive exams for that degree remotely on my computer, and they released the questions to me and gave me several days or whatever. And I had a very severe attack of vertigo while I was sitting at the computer trying to write one of my answers. And so spousal unit came home from work and literally found me lying on the floor with my hands out as if to like… we didn’t have carpet so I couldn’t dig my fingers in, but I was just lying there, clutching the floor, and chanting over and over to myself, “You can’t fall off the floor. You can’t fall off the floor,” because the vertigo was so bad, it felt like I was just going to go spinning off into outer space.

Brianne: Yeah. You have a new awareness of the Earth’s orbital rotation.

Crew Dog: And, rationally, I could tell myself that this was not going to happen, but my body was not buying it.

Brianne: Yeah. That doesn’t… it’s one of those situations where it does not help actually, talk yourself down.

Crew Dog: So, yes, other than the exams, I don’t remember, and again, this was almost 20 years ago, but I don’t remember the migraines really affecting my schoolwork very much at that time. But I obviously remember that experience of trying to take my comprehensive exams and just being so incapacitated that I just had to lay on the floor until I got some sense of stability.

Brianne: Yeah, yeah, ugh, yeah. Vertigo is awful. And I imagine too… this is one of those things about looking back in retrospect, is those moments, as they start to click into a pattern, sometimes new moments appear that you’ve never really thought about before. And you’re like, “Oh no, this isn’t a much stronger pattern than I realized,” but you don’t see them if you’re not looking. Then you start to look

Crew Dog: Right. Right. So this new sort of chapter of my life… now I’m dealing with migraines and vertigo, but one of my closest friends had had migraines for a decade longer. And so they were sort of my role model, you know, and I would go to them and be like, “Okay.” And they were like, “Well, I don’t know, but maybe try this,” but their attitude was just like, “Get up and drive on.” So I… even though I now had migraines and, you know, I had to be a little careful about what I ate and had to make sure that I wasn’t around too much cigarette smoke or perfume or it wasn’t too hot in the vehicle while we were traveling or whatever… I think that I still had a lot of internalized ableism and I did not, at that point… my identity didn’t shift. So I was just like, “Well, okay, I’m still me. I’ve got a few limitations, but that’s my problem. Not anybody else’s problem. And I’m just going to try to do everything I did before, without inconveniencing anybody else.”

Brianne: Yeah. I feel like. I just had this vision of what they say about… I think ducks are waterfowl, how it’s like, on top, they look completely calm as they’re floating on the water, and underneath they’re paddling as fast as they can. And as you were describing it, I was like, “Oh, that’s so many of us,” who it’s like, “Okay, well, my job stayed intact, but I started to get rid of my hobbies, and then I started to get rid of my social life, and all of that time was taken up by self-care.” So it’s like underneath the water, I’m paying attention to my environment and my diet and my sleep cycle. And I’m constantly scanning my body, but above the water, I’m like, pretending to be in… not even pretending, yearning to be an abled member of society or something.

Crew Dog: Passing as, yeah.

Brianne: Yeah. So yeah. Still passing as… and I think like, cause I relate so much to that too, it’s hard when everyone… if no one… not, “No one tells you,” that’s not the right way to say it, but like, when everyone around you is pushing through and acting like it’s no big deal, even when you have like, maybe an accumulation that is more than these people who are like, “Oh yeah, I have migraines, but actually it’s fine.” You’re still like, “Okay, well maybe migraines are fine. That’s not a disability. That’s not disabling.” And you pull all these things in, and then you’re like, “Yeah, maybe… this is hard,” hopefully, or something. It’s amazing, I think, how long we can kind of be like, “No, this is fine.”

Crew Dog: Right, right. That’s so true, and there was a thread on Twitter this past week where people were sort of talking about a similar topic, and one of the responses that just really resonated with me was, “I didn’t see myself as chronically ill or disabled until it started to affect my energy levels and my cognitive health ability.” And then, for that person, I can’t remember to attribute who that was, but for that person and for me, those were sort of the breaking points where you can’t deny it any longer.

Brianne: Yeah, you can’t fake it any longer, even if you weren’t consciously aware of faking it or aware of consciously choosing to fake it. You’re like, “Oh, can’t even show up and pretend.”

Crew Dog: Right. It starts becoming obvious to others.

Brianne: Yeah. Which is its own thing. So where was that point for you? Or is that around where we are? Because you’re kind of saying like, things are getting harder and harder, but you’re not thinking of it… you’re not identifying as disabled. You’re still kind of trying to brute force your way through, yeah.

Crew Dog: Right, when the vertigo happened, and I finally got a diagnosis of migraine, I had separated from the military and spousal unit was working, still in the military cause we were a dual military couple. And I was, as I said, going to grad school and thinking that, “Okay, I’m going to apply this degree; I’m going to get a job when I finish.” But I wasn’t having to work at that time. And of course, we moved every two to three years, so it’s… this isn’t the subject of this podcast, but it’s difficult for spouses to have a career of any kind with that much moving around. And I could go onto that, but it’s really not the topic… just to say that I wasn’t trying to also work at the same time when all this was happening.

Brianne: Yeah, for unrelated, but obviously relevant reasons.

Crew Dog: Right, right. And so well, I’ll just… I’ll expand just a little bit more. Spousal unit and I, when I decided to separate from the military, sat down, had a long talk about it, decided to preference their career at that point, because we really wanted a military pension, and so the agreement was, spousal unit was about halfway through the required commitment to earn the pension because you have to serve for at least 20 years to get a pension, or if you separate before that, there’s nothing. Now it’s a little bit different. There is like a 401k equivalent that you can take with you, but when… back then there wasn’t. And so we agreed that their career would be preferenced. But then, once that was secured, then the plan was that I would go back to work and have a second career. So we were going to kind of do them sequentially, you know, instead of consecutively. So the problem was that after spousal unit had secured the pension, and it was my turn, I went to get a PhD, and so now I am still not working, but I’m in grad school. And I’m still having migraines and sometimes having to go to my office in between classes and take a migraine nap on the floor under my desk kind of thing, but still don’t see myself as chronically ill or disabled in any way.

Brianne: ”It’s fine. Nobody can see it. Everything’s fine.”

Crew Dog: Right? I’m going to classes wearing a ball cap and sometimes sunglasses. Professors think I’m this weirdo in the corner, but everything’s okay. Nothing to see here.

Brianne: Yeah, no, it’s just very bright, and I don’t why no one else needs a hat and sunglasses.

Crew Dog: So it was during this time where spousal unit was transitioning out of the military and you know, me completing a PhD and starting my second career was becoming the priority that my health got significantly worse. And it’s kind of hard to peel the onion.

Brianne: Yeah.

Crew Dog: During my PhD, we lost several of our parents. There was just so many, so many things going on, but the germane things that happened to this conversation were… I had a slip and fall injury on a vacation so spousal unit and I were on like a one-week vacation, I slipped and I fell on a wet tile floor and tore and ruptured connective tissue from my hand all the way through my scapula.

Brianne: Ah, okay. It’s a lot.

Crew Dog: So at this point, I’ve done all my coursework. I’m doing an externship, and I now have ruptured everything. And I wrote about that a lot on my blog because it was an ordeal. We didn’t have good military providers where we were at that point where we were living, and so it took me… the doctor said the same thing I’d heard my whole life, “You don’t have any broken bones. You’re fine.” They did x-rays. I had no broken bones, so I was fine. And I still didn’t know I had a connective tissue problem, but I knew that something was seriously wrong with my ligaments. It took, I think it was 14 months of fighting with the doctor before I got an MRI for my shoulder.

Brianne: And was it all with the same facility that you were fighting with or did you ultimately add…

Crew Dog: Yeah. That doctor just kept saying, “The x-rays were good. You don’t need an MRI.”

Brianne: You’re like, “That’s interesting, but a year has passed. And so the question is no longer if a bone is broken. The question is what’s wrong that I am still in pain a year later, if it’s not a broken bone?” Like argh, doctors.

Crew Dog: Right. So meanwhile, here I am doing my externship with severe pain, to the point where I’m having days that I have to go home early because I’m in too much pain to sit there and continue to work. For anyone who’s ever torn the labrum in their shoulder, it’s excruciating. I thought migraine pain was bad, and there’s different kinds of migraine pain, and they are bad.

Brianne: Right.

Crew Dog: But the torn labrum was the most pain that I’ve ever experienced up to that point. So I finally convinced them to do the shoulder surgery.

Brianne: And was it pretty quick after the MRI? The MRI was a fight, but it was revelatory? Or was it… the MRI was one step in a longer fight?

Crew Dog: Well, the MRI showed that the labrum was about 90% torn. And so what’s the next diagnostic procedural HMO step, right? They send you to physical therapy. Physical therapy is never going to repair torn connective tissue. It can’t do that.

Brianne: That’s not a related problem to what physical therapy does.

Crew Dog: So I went to physical therapy, which tore the labrum on the remaining 10%, so it was now completely ruptured.

Brianne: That makes me want to scream. Just because it is such a predictable outcome, and it’s such a huge problem. Everything about the relationship between insurance and physical therapy is broken.

Crew Dog: Right. And I love physical therapy when it’s the correct application. It is so incredibly beneficial.

Brianne: Yeah. And it’s never covered chronically. It’s only covered for acute situations for most people, which is like, “Oh, so the situation where it works, people don’t get to go to, but the situation where it doesn’t work, but you’re using it to defer paying for therapy. We’re just going to put everybody into?” The logistics of some of this stuff, even if I agreed that we should make finances the number one priority in healthcare decisions, but like, I don’t agree, and if I did, I would still be mad because it makes no sense. Anyway…

Crew Dog: Yes.

Brianne: Yeah. So anyway, that was my side tangent to that, how mad the insurance/PT relationship is, but you had a terrible PT experience, obviously, tore your remaining 10% of your labrum. That’s awful.

Crew Dog: Right. Right. So I had a surgery to reattach the labrum. And then we moved again, and right before moving… when I separated from the military, I still thought that I was able, and it was before… I separated prior to 9/11, prior to the military campaigns that have happened subsequently, and there really was not the emphasis on making sure that veterans or transitioning military personnel were aware of and understood their VA healthcare benefits. So I did not get screened or apply for disability benefits because I didn’t think they applied to me. And so it really was not until spousal unit was retiring and going through the process, and of course by now we had been involved in OIF/OEF for at least a decade. And there was a lot more emphasis now on making sure that transitioning military people knew about these benefits and care. And so at the same time I had Vietnam-era and Korean war veterans saying to me, “You really need to go and apply to the VA healthcare system. We didn’t after our wars, and then we got sick and disabled later.” And there’s a lot of complicated rules, but I served during Desert Storm during the first Gulf war, and anyone who’s served during a war time period is eligible to apply. You may not get accepted, but you’re eligible to apply.

Brianne: And is it for access to VA healthcare, basically as a veteran? Just to qualify for that service more or less?

Crew Dog: Yes. So it’s a little bit like… and I don’t know that much about civilian disability, but it’s a little bit like that as far as I understand it, in that you apply, and they have screening physicals and they review all your paperwork. And if they rate you as 30% disabled or greater, then you have access to VA healthcare. If it’s less than 30%, you may get a small disability check every month, but you don’t have access to the VA clinics and hospitals.

Brianne: Okay. So then you’re still looking for healthcare however everybody else is doing it. On the marketplace or through whatever it is.

Crew Dog: Right. Right. So these older veterans were telling me, “You’re not going to be young and healthy forever, and once you meet that threshold and you start to get healthcare from the VA, they will treat you for anything. It doesn’t have to be the thing that was originally broken.”

Brianne: Right. They’re like your main healthcare provider. They’re not only managing what would maybe be military-related disability. They’re not screening only for that at this… once you have service. I hope that makes sense. Yeah.

Crew Dog: Exactly. Yeah. So these older vets were telling me, ” Go apply. Go apply, and see if you can get your foot in the door because if nothing else, it’s good to have that as a backup.” And so those older vets combined with spousal unit also going through that process and us learning about it, I finally went and applied for VA disability well after I had separated from the military. And I’ve written about that on my blog too, so if anybody’s interested in, “Okay, well, I didn’t do that then, but I need to do it now, or I want to do it now.” Shameless plug for my blog. You can go read about it.

Brianne: All the details are covered. Perfect.

Crew Dog: So I applied for VA disability, and I got a 30% disabled rating, which I need to appeal to see if I can get it increased because they said that several things that were wrong with me were not military related when in fact they are. But I’ve been too ill since then to go through the appeals process.

Brianne: Yeah. Right, which is perhaps as if it were designed that way to make it difficult for our people to appeal because of the disability that brought them to the system in the first place. Yeah. That’s a widespread system problem, obviously. Not just this one system.

Crew Dog: It is. Yeah. It happens outside the VA as well. Of course. So we moved, and I got the notification from the VA that. I was in fact 30% disabled in their eyes and therefore eligible for VA healthcare, and that I would be assigned to a provider in our new location, but there was a nine month waiting period.

Brianne: Great.

Crew Dog: Because they were so backlogged.

Brianne: Yeah.

Crew Dog: So, my shoulder has been repaired. Yay. Doesn’t hurt anymore. Very happy.

Brianne: Okay, wait, sorry. So you had access through your spouse to healthcare previously, and then once your spouse also separated, then this is when you were now looking back for health care options? My brain likes to make sure I understand these details. Because what I was wondering… what brought me to that question was… cause the shoulder surgery was done before this, right? Or was it done? Yes. Okay. So that was done, but of course you’re still obviously looking for good health care. So the shoulder surgery was done before you were getting treated by the VA. Is that right? Okay.

Crew Dog: Yes. Great questions. Yes. So. Because spousal unit retired and secured a military pension. They also… part of the benefits of that retirement package was continuing healthcare for both of us.

Brianne: Gotcha.

Crew Dog: So we are incredibly fortunate that because spousal unit also went through the process and was qualified as a disabled veteran, we have two ways to get healthcare. We have the military retiree healthcare, and we also have VA healthcare.

Brianne: Okay. Gotcha. Which… it shouldn’t be the case that you need more than one path because some of the pathways will fail you repeatedly. But I understand what you’re… I hear what you’re saying.

Crew Dog: Right. And so this becomes really important. Again, that Twitter thread that I referenced earlier, we talked about privilege and luck and… sorry, it was a different Twitter thread… privilege and luck and hard work. And the fact that really, it takes all three. And so spousal unit and I worked really, really hard to be able to have military careers and to be able to qualify for a military retirement. But at the same time I recognize what a privilege that is and how fortunate we are to now have those redundancies and guaranteed healthcare for the rest of our lives is huge in the States.

Brianne: Yeah. That is, especially right now, no small thing in this country. I say, right now, I don’t know exactly when this will come out, but I’m saying that because of the Supreme Court the ACA again. But yeah. It does feel like health care is under threat a lot of the time, because it is so everything that guarantees a little bit of access is a good thing. We just need so much more.

Crew Dog: Right, right. And so this now becomes really, really salient because… perfect setup, Bri great job. Because I started having to play mom against dad, meaning my military retiree health benefits and the VA health benefits. I waited nine more months to get a VA provider, and to condense the story, basically the military still wasn’t recognizing that I had ruptured connective tissue in my wrist, torn connective tissue in my hand, some kind of issues still going on with my elbow, and probably torn connective tissue in my scapula. “We fixed your shoulder. There’s no broken bones. You’re fine.”

Brianne: “You’re fine now. Congratulations. Don’t you feel fine? We’ve decided.”

Crew Dog: Right. So to try to keep the story from getting ridiculously long, I finally got to see a VA provider and she was fabulous. One of the best providers I’ve ever had.

Brianne: Yay!

Crew Dog: Yes. Yes. I went there really not expecting much and she listened and took action.

Brianne: Yeah. Which one of those things where it’s like, “That’s so exciting. I know exactly how that feels,” and simultaneously, “How is that the bar? That should not be the bar. That’s the floor.”

Crew Dog: Right. And the whole time that she was my provider, I told her how wonderful she was. And she, every single time she said, “I’m just doing my job.”

Brianne: Yeah. Yeah. And you’re like, “You don’t understand. Most people don’t think this is their job.” Which again, I know there are bigger systemic factors at play, but ultimately what happens is that a lot of people are getting very bad care. So we’re so excited to be heard and maybe helped, but even heard.

Crew Dog: So she sent me for MRIs of theplaces that were messed up.

Brianne: Yeah.

Crew Dog: At least we started with the wrist, and so it became a thing where I had a very inadequate military healthcare provider, and I had this fabulous VA health care provider. And so I would go to her, and she would get the diagnostics, and then I would take those diagnostic results back to the military side of the house, and say, “I have proof now that this is broken, and I want you to fix it.” And the reason that I did that is most VA hospitals are considered teaching hospitals, and most of them are co located with a medical school in the same city, and so the VA has of course permanent employees, but it also has, at most of their hospitals, a stream of residents. And I know people that have had surgeries at VA hospitals and everything’s gone great, but we’re talking about my wrist was badly damaged, and I didn’t want to trust the VA to repair that because it’s one of the most critical parts of your body. So I did a lot of research, and I found a civilian orthopedic surgeon who I felt comfortable trying. And so I went to my retiree healthcare and said, “Here’s the MRIs. And here’s the surgeon that I want, and he accepts this healthcare. So give me a referral.”

Brianne: “Make this happen.”

Crew Dog: Right. And so they did, and I went and met with the orthopedic surgeon, and at the same time, he was also a military retiree. And I have friends who are military doctors. And so I also, in addition to all the ways that you can vet a doctor, that anyone can vet a doctor, I contacted my surgeon, military doctor friends and said, “What do you know about this guy?”

Brianne: Yeah.

Crew Dog: And so I was checking up on him that way as well. And they came back and a surgeon friend of mine whom I trust said, “He’s considered one of the best hand surgeons, and I would let him do anything that he wanted to procedurally

Brianne: That is a heck of an endorsement.

Crew Dog: Yes. So I went to this surgeon, and he looked at all the imagery and said… at this point, it had been 27 months of me fighting with military healthcare to get care for that wrist. And he said to me, “If you had waited much longer, I would not have been able to repair it. I would have had to just fuse the bones, and you would have had no joint there anymore.” So, he wound up doing three separate procedures on my wrist to repair it. I think all the details are on my blog, and I don’t know how much do you want to get into the weeds about what was broken and what he did to repair it, but he basically had to do three separate procedures to try to repair everything that was wrong with my wrist, which included putting a surgical screw in. And the surgery went fantastically. He was really excited by the outcomes and the range of motion that I eventually got back to afterwards. And I was thrilled to have a wrist and no pain.

Brianne: Yeah. What you went in for, you actually left with, which is a pretty big deal when it comes to medical interventions.

Crew Dog: Yes. And the practice, they had their own operating rooms. It wasn’t in a hospital, and it was a really excellent experience. And so we let that surgery heal. And then I went back and I said, “What about my elbow?” Every time I extended my arm, it would clunk and something was catching inside the joint. And of course there was pain, so we’ve resolved the shoulder pain. We resolved the wrist pain. I still have elbow pain. I still have scapula pain.

Brianne: Yeah, those other spots are probably like much more on your awareness now than they were when there were four.

Crew Dog: Right. I knew it was all not correct, but we’ve been slowly sort of ticking off. So more MRIs and he went in and did more surgery on my elbow, which was two more procedures. He didn’t exactly… he wasn’t able to pinpoint exactly what was wrong in there. So part of it, he was, and part of it, he wasn’t, and so he kind of did some things that should help, and they did, you know what I mean? But it wasn’t a clean diagnosis in the elbow case.

Brianne: Right. It was like, “Maybe this will help.” It appears that it did. In some ways this is luck because they could have had it less of an impact based on what we understand about what’s happening here.

Crew Dog: Right. Right. So like he was able to say, “Okay, yes, you’re having a problem with what they call tennis elbow. I can go in and repair that. The pain that you’re having, I can,” didn’t know you could do this, “I can move your nerves over so that they’re not as close to the elbow joint. maybe not getting impinged.” Yeah. And then he’s like, “But the clunking is not a typical symptom, and I just removed a huge blob of fat. And hopefully now the motion is not impinged anymore.”

Brianne: You’re like, “Okay…”

Crew Dog: So, I wouldn’t say it was a perfect result, but I’m very satisfied with… an excellent surgeon did the best that he could.

Brianne: Right, which I feel like really important thing to focus on is that I think most patients recognize the difference between a doctor who is not putting an effort in to figure out what’s wrong or not hearing you because they’d rather just ignore you and a doctor who’s paying attention and limited by the limits of medical science because of course they’re there. We haven’t actually solved medicine. We don’t have Star Trek medicine yet. Patients know. We can tell the difference. I think that’s important.

Crew Dog: Exactly. And this surgeon is one of only two providers that I’ve seen in my entire life, where I came in and said, “Here’s the literature that I’ve read, and here’s what I understand, and here’s what I suspect.” And he said, “Okay, great. Here’s a couple more articles I would recommend to you.”

Brianne: yeah.

Crew Dog: He’s one of only two doctors that I’ve swapped literature with. He wasn’t intimidated by me as a patient. He was thrilled that I wanted to be that involved with my care.

Brianne: Yeah.

Crew Dog: So there was definitely a level of not only trust, but also mutual respect. And like you said, you can obviously tell when a provider is just going through the motions.

Brianne: Yeah. Yeah. It’s like when someone’s enthusiastic about their job as a doctor or whatever I know doctors have bad days et cetera, et cetera. But yeah, when they’re interested and curious, it comes off very differently than when they’re like, “Oh, that doesn’t make sense. You’re wrong.” And you’re like, “Okay. Well, it’s fine if my theory doesn’t make sense, but my symptom is still present. So would you meet me halfway here on the detective work?”

Crew Dog: Exactly. “If it’s not that, then what do you propose that it could be?”

Brianne: Yeah. “Let’s assume it’s not nothing.” Which people talk about a lot, “Let’s reject the null hypothesis, and go from there.”

Crew Dog: Exactly. So now we live through the recovery from the elbow surgery, and of course there’s PT after these surgeries and everything. And long story short, it wound up being five surgeries, most of them having multiple procedures, but five separate incidences of going to have a surgery and recovering afterwards because the original shoulder surgery started to fail. It turns out that in anybody older than about 30, labral repairs don’t have a high success rate. So my new surgeon wound up… of course, we had to get more imaging and… my new surgeon that had done my hand and my elbow now went in and did what they call a revision surgery, which is anytime they have to go in a subsequent time for the same body part. Yeah. So he went in to do a revision on the shoulder. And then we kept an eye on the wrist. He put the surgical screw in there, and originally he was like, “We used to put them in there, and just leave them in there. But now, you know, I was reading all the literature, and it was saying most people didn’t leave them in longer than 12 months.” And so he said, “Well, it’s stable. It’s healthy. I’m going to leave it in there until we have a reason to take it out.” So think it was somewhere between 14 and 18 months after the wrist surgery that my wrist started to hurt again, and we had more imaging done, and the screw was starting to move and impinge on the range of motion. So the fifth surgery, he went in and took the screw out and then he had to do something to fill that hole. And I won’t get into details, out of respect for your vagal nerve.

Brianne: Much appreciated by my entire autonomic nervous system. Does not like anatomy.

Crew Dog: Yeah, that was the fifth surgery, and this is how cool my surgeon was. In recovery he said, “I figured you were the type of patient that would want to keep their screws. So here you go. I kept it for you.”

Brianne: You know, if they know, they know.

Crew Dog: Exactly. So I now have the screw. They sanitized it. I now have the screw that was inside my wrist for about a year and a half.

Brianne: The screw that lived in you.

Crew Dog: And, he said, “Scapulas are super tricky. And the success rate for surgery is so low that I don’t want to touch your scapula. I believe you, that you have pain. I believe you that something is wrong back there, but I don’t recommend surgery unless it gets to a point that you just can’t live with it.”

Brianne: Yeah.

Crew Dog: So we didn’t repair that. So all of this was happening while I was doing my externship and then after my externship. So I had done all my coursework. I did my comprehensive exams for my PhD after my first shoulder surgery, but before everything else was repaired, and then I did two externships while everything was not repaired.

Brianne: Yeah, while the wheels were falling off the bus.

Crew Dog: Yes. Yes. This is what I’m trying to paint the picture. That I was doing my PhD and my body began to catastrophically fail. And so I managed to do all the coursework to a level at which I was inducted into a national or international honors society. Did the comprehensive exams. Did a master’s thesis because the master was embedded in the PhD. Did prestigious externships, and of course I’m still getting migraines, but that’s secondary to all the ruptured tissue that’s giving me so much pain. And I finally get through all of the repair surgeries, and my advisor just sort of keeps giving me continuances on getting my dissertation proposal submitted. And I had started working with a research team. So I had been going to conferences and submitting papers and book chapters and whatnot, all the things that you do.

Brianne: Academic stuff.

Crew Dog: Right. All that academic stuff, while I’m getting all these diagnostics and surgeries and everything else. So I think, “Alright, we’ve gotten that resolved. Now maybe I can finally do my dissertation and finish my degree.” And that’s when I started having the energy limitations and the cognitive functioning issues.

Brianne: Okay. So as you’re gearing up for the next stage. Yeah, the next stage of extreme cognitive output.

Crew Dog: Yeah and spousal unit told me recently that they think it actually started earlier than that. They think that I was having those energy and cognitive issues while I was doing my first externship. So I was working between 20 and 40 hours a week. And then coming home and spousal unit said, “You really didn’t have energy for anything else.” So, but I… I hadn’t really recognized that yet.

Brianne: Right. Well, it’s like the boiling frog thing. Your energy is siphoned away, or your cognitive function, or likely both, but it’s like at such a slow rate initially that it feels like, “Maybe I just slept poorly last night.” Like there’s so many other more obvious, plausible examples that can explain being tired, but it’s like the cumulative impact of being that tired all the time is not really explained by whatever rationale.

Crew Dog: Right. Yeah. I was doing a research externship, and I would come home and and tell spousal unit, “I can’t brain anymore. I’ve used up my brain for the day.” But I just somehow was telling myself, “Oh, that’s just because this job is so cognitively demanding.” It’s not because anything was different in my body, right? It was circumstances, not me.

Brianne: Yeah. It’s incidental. Of course.

Crew Dog: But we reached a point where I was doing these surgeries and I was still trying to be a good research team member, but I was starting to spend most of my days just laying on the couch and. and I was starting to… my research team took turns being the lead on the various projects. And, you know, I got one project about 85% done, 90% done and had to hand it off to somebody else to get it over the finish line. And I started missing conferences and, you know, it was becoming… or not being able to follow through on commitments, like being a journal reviewer and various things. So when it started significantly affecting my work is when I finally recognized the severity of the problem.

Brianne: Yeah. And how were you interpreting it at that time? Were you thinking of it as fatigue and cognitive stuff? Was that the language that you were using? Do you remember?

Crew Dog: You know, I think I really got the awareness of cognitive dysfunction as a term and as a symptom from you. Before I was just calling it brain fog. And before I would sometimes have cognitive effects for my migraines, but they were so transient that I didn’t really accept them as a limitation to the same extent.

Brianne: Yeah. And if it seems like… obviously migraine is on such a spectrum, but yeah, if you expect it to pass, then it feels really different than something that you’re like, “I don’t really know what’s causing this or when, or if it’s ever going to, to alleviate.”

Crew Dog: Right. Right. And if my cognitive symptoms lasted a half day or two days, you can kind of work around that when you’re a student, if it’s short like that. But the effects were getting greater. They were lasting longer. And then with the fatigue as well, when I just couldn’t perform up to my own standards anymore, and I couldn’t fulfill my obligations anymore… when it got to the point where it didn’t matter how hard I paddled underwater. It was glaringly obvious to the entire world that I was not able to perform.

Brianne: You were no longer in tight formation with those other ducks. You are definitely not living the same life as the other ducks anymore. It is apparent above the water. Yeah. Like sleeping in place.

Crew Dog: Yes, I was in some combination of denial or stubbornness or pride or internalized ableism or whatever. I mean, I fought for probably four years to stay in my PhD and to try to meet the requirements. I did not relinquish my PhD. It was ripped from my bloody fingers, and it was one of the greatest traumas of my life. I mean, I accomplished what I set out to do, up until that point. That was, that was my first great failure.

Brianne: Yeah. And do you… chronic illness and academia is such a complicated and messy thing and even more so in 2020, which I know that’s not… this is pre everything that’s happened this year, but was it… were you looking into accommodations at all? I don’t mean to phrase it that way. I’m sure that you had created a million incidental accommodations, but had you gone to your disability office at all? Was that an option or was that something that you were thinking about? Or like, what was that side of things like before you left?

Crew Dog: That’s an excellent question. So I had gotten ridiculously lucky, back to that combination of hard work and privilege and luck. I had gotten ridiculously lucky, and I was one of two grad students in the entire program… the whole department that had an office with a window. Nobody else had windows. A lot of the faculty didn’t have windows. And I had this little sliver of a window, and so I could have some natural light because fluorescent lights are really bad for most of us with migraines. And I brought in a bunch of lamps from home. So I had made my own accommodations and got ridiculously lucky with the circumstances. And had never asked for any accommodations when I was doing the coursework. I honestly didn’t really even know that that was a thing you could do.

Brianne: Yeah, I wouldn’t have at the time that I was a grad student either.

Crew Dog: So when I was desperately fighting and trying to do the dissertation. At one point, I had even moved back to my university’s town, and it sounds kind of radical if you’re not a military family, but I had left spousal unit and K9 back in our retirement home. And I had just like, “Okay, I’m going to go back to town and try to get an apartment and try to see if I can finish the dissertation in a year.” And at that point, people had started to tell me that there should be a disability office at my school, and I could ask for accommodations. And so I found the office and I went and made an appointment, and I met with one of the disability officers, whatever their title was. And I said, “I’m having a lot of cognitive issues, and what I really need is somebody to help me organize my proposal, structure it, and do a sanity check on it. I need a reviewer.” And they said, “We don’t offer anything like that for graduate students. There’s a reading help center you can go to as an undergraduate,” but basically their attitude was, “By the time that you’re a graduate student, you should know how to do those things. And if you can’t, you don’t really belong here.”

Brianne: Right.

Crew Dog: But they didn’t say that. It was very much the, “We kind of know what to do to help you, if you are visibly disabled, and we have no idea and no services, if you are invisibly disabled.” And so I was just sitting there going, “Well, this is what I need.” And they were saying, “Well, that doesn’t even exist.” And so that was my experience of trying to get accommodations. Meanwhile, while my advisor was good in some areas, they also had been a drag on my progress throughout my career, because they would keep changing their minds about what they wanted, so there were delays and obstacles from my advisor, from my department. I can’t get into a lot of details without potentially doxing myself. But I had gone to my advisor and said, “This isn’t working. This is what I need.” And he promised to do better, but then go back to the same old ways. I had gone to the department head and asked about transferring to a different advisor. There were a couple advisors who were really good about helping their students progress

Brianne: Right.

Crew Dog: Instead of delaying their progress.

Brianne: They had a different approach to mentorship.

Crew Dog: Yes. And my department head didn’t want to get involved in the politics of my program, and he also didn’t want to allow me to transfer to the advisor that I wanted. He offered me sort of a lateral move to a different advisor who I wasn’t convinced was going to be any better at helping me get through it.

Brianne: Right.

Crew Dog: And so I felt like I was drowning, and I was asking for help in the only ways that I knew how, and nobody was bothered because there was no incentive for them to make sure that I actually completed.

Brianne: Right. It’s not an important metric to them. And one of the things that’s so hard about this that you just really described, is we don’t… with some of this stuff, so some cognitive function… it’s so poorly articulated, and most people don’t go see a neuropsychologist who will run the test and tell you, you know, like, “Your working memory is impaired,” whatever it is, there’s so many things that it could be, or a combination of things that it could be. But most of us don’t know what the one specific real hurdle is because it doesn’t… we don’t experience a working memory delay. We just experience brain not working. I think about this with work too. It can be so hard to have that conversation about what accommodations work because what it sounds like, as per your experience is like, “I don’t know how to do the brain work required for this.” And they’re like, “Oh, sounds like you’re not qualified.” That’s not the problem, but the language to articulate that is not universal yet. Maybe we’re having these conversations within the disability community, and then maybe some people who work adjacent to that are a part of them. But like if you don’t need extensions, and you don’t need to be allowed to miss classes, like you need more meaningful support in your workflow, it’s not standardized to say the least, like it’s a naughty problem. I feel like, and not in a way that I want to defend anybody who’s reinforcing it. I just like it’s… I find it hard to wrap my head around, is what I’m saying.

Crew Dog: And I am violently nodding in agreement with you. That reminds me that part of my VA screenings physical… I had said that I was having cognitive issues, and as part of my screening medical, I saw a VA psychologist. So he had reviewed my file, and when I arrived, he basically said, “So what’s your issue?” And I kind of tried to describe it to him and he interrupted me and said, “But you’re still in grad school, right?” And I said, “Yes.” And he said, “You’re in a doctoral program.” And I said, “Yes.” Basically, his mind was made up before I ever arrived that if I was in a doctoral program, there was nothing cognitively wrong with me.

Brianne: Yeah. Those just couldn’t co-exist. Not possible.

Crew Dog: Right. So I saw a psychologist, but he never even dreamed of referring me to a specialist, like you mentioned, because in his framework there couldn’t possibly be anything significantly wrong with me. Or I couldn’t be struggling if I was still managing to be in a doctoral program, even though at that point I had already stalled out.

Brianne: Yeah. And that you as an adult didn’t have the tools to assess whether or not your cognitive performance has changed, even if you didn’t know the specific ways in which it was compromised is also intriguing. I don’t ever understand why we don’t get believed, except that it’s easier to just pretend there’s no problem if you don’t know how to help it, but like the thinking behind it, that somebody would specifically bring something like this up in that context… if it weren’t important or seriously impacting you, it wouldn’t even be on your mind. It just doesn’t even make sense.

Crew Dog: Right. I would have nothing to gain by spuriously bringing that up.

Brianne: Yeah. Spurious neuro-psych testing to find out what interventions you might be able to do. Yeah.

Crew Dog: Right. Like, “Oh, I could be finishing my PhD and launching my second career, but I would rather be stuck in this diagnostic limbo because I like the attention,” or whatever other reason they always attribute…

Brianne: Yeah.

Crew Dog: …to us chronically ill and disabled.

Brianne: The secondary gains, et cetera.

Crew Dog: Yes. Thank you.

Brianne: Yeah. The worst.

Crew Dog: So, somebody else on Twitter said, “When you compare the secondary gains with the primary losses…”

Brianne: Yeah, that was a good one. And exactly on point. It doesn’t even… the scale does not level out.

Crew Dog: I was thinking, “What does this guy feel personally threatened?” If a doctoral candidate could have mental problems then, “Oh my gosh, it could happen to anybody.”

Brianne: Yeah. “The world isn’t just?” Yeah. Yeah, so that… all of it. Yeah. It’s hard. Cognitive dysfunction… it’s hard to get people to take seriously and recognize and believe. And it’s hard to accommodate because we’re not having those conversations yet, I don’t think. Or not… not in this kind of population. Okay. So, are we caught up to the present yet? I know that we’re not actually, we must be close though, right?

Crew Dog: Yeah I feel like we, basically… oh, yes and no. The other really significant puzzle piece that we haven’t brought in yet is I did go to the VA hospital while all these other surgeries and recoveries were happening. I had a different physical issue, and I was going to let the VA do the procedure for that. And I went to the hospital to have the procedure, and they had a new protocol. This was before COVID, but they had a new protocol for pre-op to try to reduce MRSA, multiply resistant staph whatever.

Brianne: Yeah.

Crew Dog: So they told me, and I’d already had several surgeries in other facilities and had never done this before, but at this VA hospital, they told me to take these antiseptic wipes, body wipes, and wipe my entire body, apart from my face and my groin. Wipe my entire body down with these antiseptic wipes, and then let them air dry. Let my skin air dry. Don’t rinse it off, put on the hospital gown. So I did that, and they wheeled me off to go get ready for my surgery. And there was some kind of a back up. They were delayed. And probably somewhere between 45 minutes to an hour after when my surgery had been scheduled to start, I had a severe allergic reaction to the antiseptic wipes.

Brianne: I had a feeling that’s where this was going.

Crew Dog: Yes. Which I also blogged about. But it turns out that I am severely allergic to chlorhexidine.

Brianne: Okay, and so you were able to identify the specific thing.

Crew Dog: Fortunately the surgery… they had not… I had a port, but they had not put anything in it yet. They had started an IV, not a port. They started an IV.

Brianne: Right. You had the connection.

Crew Dog: Yes. So I’ve got the needle in my arm and I’ve got the little pigtail tube, but I wasn’t hooked up to anything yet. So yes, very fortunately, we were able to isolate it to the chlorhexidine because I hadn’t been administered anything else yet.

Brianne: Yeah. And so I had this severe allergic reaction. It is most common for people’s blood pressure to go low when they’re having an allergic reaction.

Brianne: Okay.

Crew Dog: I am in the minority of people whose blood pressure goes high.

Brianne: Okay. Congratulations!

Crew Dog: So my blood pressure… thank you. My blood pressure went up to like 185 over 110, and the nurse said what nurses everywhere always say, “Oh, your blood pressure’s a bit high.”

Brianne: You’re like, “Okay. Sure. Sure.”

Crew Dog: But anyway, I mean, I started flushing. I got hives. I was having an obvious external skin reaction as well as then the blood pressure going high and everything else. And I feel like that episode was the epigenetic trigger that activated what was going on in my body. I mean, this gene that I had that was dormant, and that’s when I started having allergic-type reactions to everything. And prior to that, when I first started having the vertigo, I had gone to an allergist as part of the workup, allergic to mold.

Brianne: Okay.

Crew Dog: So that was my only known allergy at that point. But after this episode in the hospital,

Brianne: What a strange unprecedented thing. Ha ha. Sorry. So you’re reacting to everything.

Crew Dog: That completely changed my life. That really was the trigger for me becoming… identifying as chronically ill and disabled, because it altered what I was able to do to such a degree. And then this year finally, because I don’t know how long we’ve been talking, but I was finally… I paid out of pocket to go to an expert and was diagnosed with mast cell activation syndrome.

Brianne: And how’d you in between… cause you talked about connective tissue a lot and obviously the injuries. At what point did you start thinking about it as a systemic connective tissue problem, as opposed to an injury that just for some reason wasn’t healing, was there a transfer point? I know you’re talking about mast cell, but both know that they may be related. So that’s why I’m asking.

Crew Dog: You and I know that they’re all interconnected, right? That there’s a co-morbidity between mast cell issues and connective tissue issues. Just to clarify for people who aren’t us.

Brianne: Tangentially, a really strange thing about this kind of… this is the second podcast interview that I’ve done. So it’ll be the third probably episode in the new batch. There’s one more old one to come out, but it’s like, I’ve learned so much in the last year. And I think most of the people that I talk to, especially in this round are Twitter people. So they’re like, “We’re all having one conversation, almost all the time,” that I think is going to change the tone of the podcast for people who are also Twitter people, which is not everyone. But yes, so we both know, and are like, “Of course, everyone who talks to us on the internet knows that hypermobility mast cell issues, et cetera are probably related.” And anyone who listened to the podcast probably knows if they’ve listened to all of them, because of course it’s come up quite a few times already, but I think I’m asking different questions this round. So, so yeah. So at some point you didn’t know any of that.

Crew Dog: Right.

Brianne: And you had this injury.

Crew Dog: I think for me it probably started with when I had the slip and fall injury, and I started to see providers for it, for all of the complications, whatever, that they were all shocked when I described how I got injured. The fact that I slipped, standing on a floor, hardly moving. I turned, slipped, fell, and did so much damage.

Brianne: Right. Nothing about that is expected. Right. Yes. You’re supposed to break a bone.

Brianne: Yeah. Yeah. If you had fractured your wrist, maybe, maybe we’d be talking.

Crew Dog: So for me, it started with everybody saying, “Wait, how did you… all you did was fall down, and you ruptured things from your hand, all the way through your back.” So I started to perceive that this was in fact not normal.

Brianne: Yeah. That the scope, like the scope of the injury. Suggested that there… to use a horrible phrase, that there was a pre-existing condition.

Crew Dog: Yes, yes. That there was something underlying all this that would have to explain how it happened.

Brianne: Yeah. The context.

Crew Dog: Right. So for me, that’s when I started learning more about connective tissue and I wasn’t very far into understanding any of that when I had the allergic reaction in pre-op, and then had all these allergic issues. And it was really through that research and learning about mast cell that I then found people who were also talking about connective tissue problems.

Brianne: Okay. So that was kind of the direction that you learned about it, even if it wasn’t the direction that your body showed the symptoms.

Crew Dog: Yeah. Everybody who’s paid any attention on Twitter knows how much I appreciate Lisa Klimas and Mast Attack and her scientific evidence-based approach to helping people understand mast cell issues and people in that community have helped me learn about EDS, about connective tissue problems, and about dysautonomia and POTS, which I don’t have any diagnosis.

Brianne: Oh yeah. I was going to ask if you had any suspicions of any dysautonomia.

Crew Dog: I don’t think that I have POTS, but I do suspect that I do have some dysautonomial issues.

Brianne: Which, given how intertwined they are, fair enough.

Crew Dog: If I look back now, knowing what I know, when the Air Force transitioned with their annual physical exam… there was a period where they transitioned from doing a one and a half mile run to doing a bicycle test, a stationary bike test. And so you would get on the stationary bike, and I don’t even remember what it was you were supposed to do. But again, I thought that I was very physically fit. I was very active. And yet whenever they transitioned to this bike test, the stationary bike test, I had significant issues because my heart rate always went too high, too fast. And so I was in danger of failing this test, even though I wasn’t overweight. I, at the time I, you know, I met all the air force standards. I had an active lifestyle, but my heart rate didn’t behave the way that the Air Force thought that it should.

Brianne: Right, right. Yeah. Your heart rate has a mind of its own, I guess, called your autonomic nervous system.

Crew Dog: Right. And so I can look back and see a few episodes of syncope, even in my childhood. But, again, we were all healthy, and we just picked ourselves up and dusted ourselves off and get going.

Brianne: Yeah. Yeah. Like, gosh, it was about so many things now. This is a real testament to how far the line has moved, but like with POTS, if you’re not fainting all the time, I’m not saying it’s okay. I think everyone should have management. I think all of these things, but honestly, if you’re not fainting all the time from POTS, it’s probably not your biggest problem. That’s when it, you know, like that’s the level, which not to undermine anyone’s experience. I have very variable POTS, and that’s why I’m saying that because sometimes it doesn’t register to me at all, and sometimes it’s like, “Oh, POTS is happening now, this is what we’re going to think about and try to manage.” But I think mast cell stuff is like that too. Some people have really severe anaphylactic responses, and some people are like, “Yeah, sometimes I get hives, and it’s a pain in the ass, but so far it’s not the most disruptive thing.” These are the ways that like, comparison, doesn’t help us, but like recognizing the ways that these spectra can work paints a different picture. It is still present, even if it’s not disabling, that doesn’t mean you don’t get to acknowledge it.

Crew Dog: Right. Right. And what I was going to say is doctors don’t seem to recognize a lot of these conditions until you’re at the furthest extreme, and so I don’t want this analogy to sound arrogant, but this is the analogy that I’ve been using in my own head. I feel like when I was young, you know, when I was in the military, that my body was kind of like a very finely tuned European sports car, and I was aware enough to notice when it would get slightly out of tune. And I would take it to the doctor, who in this analogy is a mechanic, right? And the average mechanic is going to say, “Well, you didn’t throw a rod. You didn’t blow a gasket. There’s nothing wrong with this vehicle.” And it’s only if you can happen to get a mechanic who specializes in high-end European sports cars, that they can see that you are somewhat out of parameters and they can repair it.

Brianne: Yeah. And with that, one of the things that’s so frustrating is that I think we as a patient community have become so anecdotally aware that like, a lot of these conditions are degenerative and in ways that we don’t fully understand. And also a lot of these conditions can be relatively stabilized with a little bit of luck, privilege, and hard work. So not for everybody. Luck is a huge factor here, but people are able to stabilize in a way that really can manage degeneration. But you have to catch it early enough that you actually have some levers to play with, and when doctors are sending people home, not unlike your shoulder tear, when doctors are sending people home because you don’t meet the threshold for scary enough that you deserve immediate care, like, people are just getting punted down the line and it’s causing all of this further degradation that doesn’t have to happen. If they could all just get enough awareness to recognize that like, “This, I need to refer to a specialty mechanic,” then I think we’d make some progress here. Like, totally agree. It just looks different.

Crew Dog: Exactly. And it’s incredibly frustrating to be the patient who knows that your conditions are degenerating and that you may not be able to get care until it’s become so catastrophic that the everyday average mechanic/doctor can finally recognize your problem.

Brianne: Yeah. And that feeds into partly the PT/surgery thing, which is that like, if everybody who was hypermobile learned their body mechanics from a pretty young age, from somebody who was a physical therapist… this is one of my big dreams. We would see so many fewer… so fewer? Injuries and surgeries and not… stuff happens. Bad luck happens. I’m not saying that we’re hurting ourselves on purpose, but like we would all have such bigger toolkits to manage everything and prevent these in some cases, huge blowouts if only we could like learn proper prevention. And I don’t mean that in a moralizing patriarchal way. I mean that right now they’re just lying to us. And so we’re not able to take action.

Crew Dog: Right. What I hear you saying is, especially hypermobile people, if we could be like identified and taught how to care for ourselves in childhood, we could prevent a lot of things that would actually cost the medical system a lot more down the road, not to mention the cost to ourselves.

Brianne: Yeah, I think that the moral argument is a mess, but I actually do think that there’s probably a pretty strong financial argument to be made, but we don’t have the data for that yet. Or no one’s collecting it. I mean, especially cause it’s genetic, it’s like, “Okay. So we know that there is an apparently significant chunk of people who are mutated in such a way that their connective tissue functions differently, and it’s pretty identifiable, and we could be doing something.” So it’s a very frustrating picture to start to see. As I’m sure everybody knows. A related question that I have, since I kind of derailed you when you were saying you were formally diagnosed with MCAS, which is a big deal. Had you already been looking at treatment options or was that also a turning point for you from a management perspective… symptom management perspective?

Crew Dog: Treatment of my MCAS symptoms? Yeah, so after I had the allergic reaction in pre-op, which, thank God, because when I looked at the literature… had I already been under anesthesia, it’s possible that I could have anaphylaxsed and even died.

Brianne: Yeah, that sounds like a very scary combination.

Crew Dog: Right. So that was definitely, in my book, very fortunate that it happened in the way that it did. But I got a referral to an allergist, and so that started my journey of trying to figure out what was going on with my body. Now that this trigger had been… you know, the switch had been flipped. Because for people who aren’t us that we’ll hear this podcast, with mast cell issues people become hypersensitive to what would be considered a normal stimulus. Your body may see as a threat. So I was having reactions to perfumes, colognes, dryer sheets. Not that those things were in my house because of migraine, but in the everyday world now my bubble, that I was able to exist in had been shrinking and shrinking and shrinking. Reactions to wildfire smoke, campfires, just so many things that I was spending more and more time at home with my air purifier, but I saw this allergist and he was the second out of two providers that I’ve ever seen, that I was swapping literature with. He was very familiar with mold allergies, but he didn’t really know that much about mast cell. And so I was bringing literature in for him, and he was giving me literature about mold allergies and different things. And so of course, another extensive overhaul to the diet because he was telling me that, you know, if you’re allergic to mold, then you should avoid anything aged, pickled, cured, fermented… I’m missing a couple, but.

Brianne: Does that basically line up with low histamine? Just like, based on what that list was, do you know?

Crew Dog: Why, yes it does!

Brianne: Yeah, I was like, “Is that a low histamine list?” Because there are many lists to choose from when you’re managing symptoms through diet.

Crew Dog: Well, he had never heard of a low histamine diet, but he was an old school allergist whose father had been an allergist. And he became an allergist because so many people in his family had allergies, and he said, “Most modern allergists do not talk about a mold elimination diet anymore, but I still think it helps.” And so he had given me this mold elimination diet, and then I went and did a bunch of research and found out that, yeah, it overlaps very significantly with a low-histamine diet.

Brianne: Yeah. And incidentally… I am not as deep into the literature on mast cell in general because I just frankly, resent how deep I’ve had to get into so many of these wormholes, and I’m not emotionally ready yet. But mold can be one of the triggering events. As we talk about mast cell and you said that reaction was probably what turned it on for you, mold exposure… cause this can overlap with the world of M.E. in an interesting way that we do not need to talk about, but mold can also be a trigger for mast cell and viral infections can be a trigger for mast cell, which is a big conversation right now around COVID. We don’t know enough, but also we’re learning so much that these pieces have started to click together. And so many stories through that lens can start to make a little bit more sense, which I find compelling. When you’re like, “Oh, there’s five diets floating around that are all basically eliminating the same set of things. I wonder if that’s because they help people with the same problem. That would be interesting.”

Crew Dog: Yes. Exactly. Yeah, because I had dabbled in things like the South beach diet and the paleo diet and they had helped. And it’s, like you say, eliminating a lot of the same foods.

Brianne: Yeah.

Crew Dog: Yes, and I don’t want us to wander too far away, but when my vertigo started, I was living in an old, like hundred-something year old European house with a moldy cellar, a basement where of course the laundry room was, so you had to go down there. And who knows if that was the trigger that turned on my migraines, you know, it’s hard to say.

Brianne: Yeah.

Crew Dog: There was something else you were saying about mold and mast cell.

Brianne: I was saying it was an activator, possibly a trigger, also M.E.

Crew Dog: Oh, thank you. What I wanted to say was, I have not found a lot of literature on his yet, it is somewhat speculative on my part. I don’t want to lead anybody astray. I do think that there is a link between histamine and migraine as well. That histamine is one of the only substances that we know that crosses the blood-brain barrier. And it is possible that the strong comorbidity between migraine and mast cell has to do with that histamine mechanism.

Brianne: Right. All of these diagnoses or experiences or symptoms, they really cluster together in some patterned ways. This is 100% one of them. So many people in this space have migraine as a part of their experience.

Crew Dog: Right.

Brianne: Yeah. Cause it also makes sense to me. And I know some other people, who are probably mostly Twitter people, but are in the same space where yeah, migraine is the primary, but like mast cell is one of the things they’re going after. And I wonder too, as you said, literally in this story, like migraine, we often go after triggers first, too, which is interesting for something that isn’t a GI so…

Crew Dog: Right. Right. So to answer your question about my treatment of mast cell, I saw this allergist, and we reached a point where, God bless him, he said, “You’re beyond my level of expertise.” And he referred me up to a allergist immunologist, and tryptase has been touted as the primary marker of mast cell by large group of mast cell care providers. And my tryptase kept coming back in the normal range. So I went and saw this other specialist and the VA sent me to an allergist. And they all kept saying, “Well, I don’t think that you actually have mast cell, but…” and they would all kind of add something. So the first allergist put me on an H1 blocker, and H2 blocker. And then the VA allergist added Singulair, which is a leukotriene blocker. And then the allergist immunologist added Gastrocrom. And then we moved again. We thought that we had found our forever home, and we were there, and I just kept getting sicker and sicker and sicker. And I finally felt like, if we live here one more winter, I may not make it. And so we moved, we moved to a completely different climate, a completely different altitude, and a completely new set of doctors.

Brianne: Hurrah.

Crew Dog: So I had built a team at my last location of doctors and providers that I trusted and respected, and I was starting all over again. But the good thing about starting all over again sometimes is that somebody suggests something new, and so it was my allergist down here who suggested Xolair. So I’ve been kind of cobbling together this treatment plan, but now the VA was telling me, “Well, we don’t think you actually have mast cell, so we want to take you off of some of these medications.” And I knew that they were helping. So that’s when I decided to just suck it up and pay out of pocket because fortunately we could afford to, which is a huge privilege. And got an appointment and waited all the months and months and months, and went and saw one of the experts who was in the camp that you don’t have to have high tryptase. And so went and did all of the testing all over again, and my prostaglandins are super high and always have been. And so I had several of the tests come back with different ways of looking at prostaglandins that were all diagnostic. They were obviously high, and he said, “Yes, you do have this.” And then I was able to take that back to the VA and say, “Yes, I do have this. Don’t take my medicine away.”

Brianne: Right. And are they receptive to that or have they been receptive to… I know this has been a tactic you’ve used before, but kind of coming in with the external diagnosis?

Crew Dog: I have found almost every doctor to honor diagnostic data. They may not believe me, but if I have something in writing with numbers or pictures, they will honor that.

Brianne: Yeah. It’s interesting, but yeah. So now you are blocking all of the histamine. That’s how I’m sure scientists describe it. Keeping those mast cells, granulated, I guess. These are all of my science terms because the problem in mast cell is that your mast cells degranulate, and that is an allergic reaction causing all of the signs of an allergic reaction. That was a terrible but H1 blockers and H2 blockers are both histamine blockers. I’m saying this for people listening now. H1 blockers are like Zyrtec, et cetera. There’s two types of H1 blockers. Now I’m just infodumping. Benadryl is an H1 blocker, but it is a different kind of H1 blocker from like Zyrtec, Xyzal, et cetera. And then H2 blockers medication. Is that what they’re marketed as? Is that right?

Crew Dog: Yes, acid reducers.

Brianne: Zantac was everybody’s favorite, and then it got pulled recently, which has been a whole thing. And so I feel like famotidine is everywhere, which is pepcid. And then… yeah, so those were my big contributions for anyone listening, who has not picked up any of those details, but wanted to know. And that’s all from the Mast Attack website.

Crew Dog: There are actually four known histamine receptors, H1-H4, and we do not have any medications currently to block H3 or H4 receptors.

Brianne: Right. And I know some people, I think maybe they talk about this on Mast Attack, are like trying to experiment with supplements and other like, sources that might operate as H3, H4 blockers. But I haven’t… again, I have not gone deep into that rabbit hole yet, so I don’t know the details of it, but the information is out there I guess, if anyone has been really looking for histamine blocking science.

Crew Dog: Right. Right. And I did go through a period of time where I tried a lot of vitamins and supplements for my migraines. I feel like a few of them helped, most of them didn’t, and I haven’t really played around with a lot of vitamins or supplements to treat my mast cell.

Brianne: Yeah, I mean, quercetin is the only one that I can… I know that there are other ones, but I feel like that’s the first one that people try.

Crew Dog: Quercetin and also some people genetically have an issue with DAOs, and I don’t remember what that acronym stands for. But if you actually are genetically tested and that is an issue for you, then there are other vitamins and supplements that you can take to help correct that.

Brianne: Hmm. Yeah. It’s… the whole world out there of personalized medicine that we are still unlocking. Yeah. Okay. So formal diagnosis, hodgepodge of histamine blockers, et cetera, mast cell stabilizers plus diet. And is that more or less what you’ve been up to lately? Fun as that sounds.

Crew Dog: Yes. We traveled to see this mast cell specialist at the end of February, and then came home at the very beginning of March. And basically, I’ve only left the house for medical appointments since then, and most of those have been in fact, either canceled or converted to tele-health. But fortunately again, fate, luck, whatever. The doctor had called and said they had a cancellation and they could move it forward to February. And I was able to go and see the specialist before things got really scary.

Brianne: Yeah.

Crew Dog: So, yes, my allergist here put me on Xolair injections, which have helped stabilize my mast cells, because as you say, ranitidine, Zantac got recalled, and that was making a significant difference for me. And famotidine does not manage as many of my symptoms as ranitidine did, but the Xolair is helping to kind of take up the slack, if you will. And I was having to drive… well, spousal unit was driving me hours to the VA hospital each way, once a month to get Xolair injections. And so then of course it was days of recovery afterwards, but one advantageous thing that happened with COVID for me was that the VA, which had previously not authorized self administration of Xolair, in fact, I know there are people in the UK that could do it, but I don’t think anybody was authorizing it in the US because you can have a severe anaphylaxis reaction to Xolair in some people. But because I had already trialed Xolair at the hospital, they make you wait for at least a half hour after the injection. Because I had already trialed it and I wasn’t reacting to it, so I was already an established patient, the VA changed its national policy due to COVID and I got authorize to give myself the injections at home.

Brianne: So that would be a big time-saver, et cetera.

Crew Dog: So they started mailing me the medication, and because I was no longer having to take this arduous trek up to the VA hospital, my provider increased the interval, so that I’m now taking it every two weeks instead of every four weeks. And that has been a very positive thing for me this year.

Brianne: Yeah, that’s a bunch of shifts.

Crew Dog: Yeah, yeah. Meanwhile, I think my angry mast cells have really caused my connective tissue issues to significantly worsen, and so now I am frantically bracing and icing and everything else. I saw a patient while I was up at the VA getting my quarterly Botox for migraines who had a rollator and I’d never even seen one before, didn’t know what it was. But she had a rollator, and I saw her walking with it. And then I saw her turn around and sit down and wait for an appointment. And I literally walked up to her as any veteran would do and said, “What is that? And how do I get one?”

Brianne: Yeah, “Where do I get my rolling seat? Like not a wheelchair. I want to walk, but I want to sit all the time. Tell me about my options.”

Crew Dog: Yes. And so she told me what it was called. She told me the VA gave her one. I went to my primary and said, I want one of these. And they said, “Here you go.”

Brianne: Hey! Not bad.

Crew Dog: Yes. Again, very fortunate. I feel like the VA… the quality of care is very spotty, and they don’t necessarily have the world’s premier experts on anything, but if you want medications or aids, they will give them to you.

Brianne: Yeah. And I would, I would imagine that like, bias is complicated. However, one of the ways that bias works is that if you’re expecting that all of your patients have already qualified as disabled, you might feel less like it’s your job to gatekeep them away from mobility aids. Cause a weird thing that happens in some patient populations when doctors are like, “No, I don’t want to give you a mobility aid because then you would be disabled.” It’s like, “No, that’s not how that works actually. The mobility aid, isn’t the difference. I know it’s the visual indicator, but it’s not the thing that changed.” So I wonder.

Crew Dog: Yeah, I agree with you, and I also think thats a fascinating point.

Brianne: Because it’s a gatekeeping mechanism that makes no sense. As soon as you become familiar with the community and see that the way that people choose to get mobility aids does not work the way that the mainstream narrative about mobility aids works. Like, “You’re giving up if you use it,” or whatever, whatever, whatever. And meanwhile, all of the patient conversations are like “My mobility aid made it so I could leave my house again. I’m so happy.” It is the opposite of giving up in pretty much every way. And mobility aids are annoying. If you don’t need one, you will forget it somewhere because you don’t need it. Many strong things to say about this, I guess.

Crew Dog: Absolutely. And I think it’s really interesting that doctors don’t tell us, “You don’t really need glasses,” and they don’t tell us, “You don’t really need hearing aids.” So what is it about using a mobility aid that they somehow think that magically makes you disabled?

Brianne: Yeah. And gosh, those biases are weird because glasses are such an interesting example because it exists. There are places where people believe that, not optometrists, obviously. Optometrists do not tell you that. But like, there are people who are like, “Oh, I don’t want to get glasses because then my eyesight will get worse because my eyes will get lazy.” I have heard that, but it is not a mainstream position. But like, it sounds ridiculous because it is so far from the common, but yeah, that’s what people think about canes and like all of them. You’re like, “No that’s not how tools work.”

Crew Dog: Yeah. Nobody tells you, “Oh, well you can’t have a shovel because then you become dependent on it. You have to keep using your hands to dig in the yard.”

Brianne: Yeah. Just, “Don’t get used to making your life easier in any way.” That’s a fun one. But you have a rollator!

Crew Dog: I do have a rollator. It’s a good thing. I’m at the point now where I’m only using it on long days, for the most part. But even… my connective tissue issues are such that my knees and my ankles and my SI joint are very painful if I have to stand for more than a few minutes. And so just having the option to sit down when I need to sit down is…

Brianne: Yeah. Major. Yeah. Standing is… someone I think asked about this on Twitter recently, but like, when I can walk, not all the time, but when I’m able to walk, usually like, walking is actually no big deal, but standing is almost always not comfortable.

Crew Dog: Right, right. Yeah. So I do the micro walks that I’ve talked about, you know, and I walk for anywhere from 8 to 12 minutes a night. And if I push it, then my knees become inflamed. And I am at a point now where I have to wear braces on my knees and my SI joint when I walk. But that is a manageable thing that I do almost every day, but if I wander outside and see one of the neighbors, and we started having a socially-distanced, masked conversation, I’m only good for a couple of minutes and then everything, all my joints just start hurting.

Brianne: Yeah, they’re like, “We didn’t agree to this.”

Crew Dog: Right.

Brianne: “We need to pre-approve all standing.”

Crew Dog:Right. And I’m frantically looking around to see if there’s something I can lean against or sit on.

Brianne: Yeah. It’s like, “Okay. Okay. Somebody is still talking to me. What can I do to be very casual and appear to be listening, but also completely changed my posture?” It’s good. Very natural. I know. I always look extremely natural as I like lean slowly away from the conversation.

Crew Dog: Well, I think you were talking about that like a year ago… about being out at an event and slowly melting and that was the first time that, that had come to my awareness. And I realized that I would do that on the couch, in the evenings, to where I just sorta started melting.

Brianne: Yeah.

Crew Dog: Becoming less vertical and more horizontal.

Brianne: Yeah. Almost as if I have no tolerance for being vertical. I had never considered that that was something to pay attention to before. Yeah. I think our bodies like seek horizontality in ways that we don’t even know about. As I’ve been fidgeting this entire conversation with my feet as high as possible, you know?

Crew Dog: Hence the reason why I’ve been conversing with you from my chaise lounge.

Brianne: Yeah. Yeah, I’ve done in many of these interviews fully reclined. The hardest part is that I like to nod while people are talking, and it’s really hard to nod when you’re lying down. And so I end up getting uncomfortable in a different way, and that’s my trade-off. Sounds solvable, but I haven’t figured it out. Yeah. Okay. So have we caught up to the present? We’re at like two hours, which is fine, but also long and I suspect both of our brains are probably blanking.

Crew Dog: I don’t sense any loose ends still hanging out there. I think we’re pretty much caught up to the present day. Except that I’ve started getting… so my type of migraine is considered rare. They’re now calling it… it used to be, when I was first diagnosed, it was called basilar migraine, and now they’re calling it migraine with brainstem aura. So the name of it has changed several times during the past 20 years of me having it, but I have started having trigeminal migraines, which is different from trigeminal neuralgia. And then in August I had what we suspect was a hemiplegic migraine, where I had weakness and numbness on one side of my body.

Brianne: And I know this just because I know, cause at the time you weren’t sure that that’s what it was, right? Because you had gone to the hospital which I’m sure was not great in August of this year.

Crew Dog: Right. Yes. I wound up spending about 48 hours in the hospital during COVID. And didn’t get it, fortunately. I just spoke to a neurologist as a follow-up this week, and at the last minute, they changed my appointment from face-to-face to a phone call. But ironically, I was at the VA hospital that day anyway because I always stack my appointments because I have to drive so far. So I had my Botox and other appointments in the hospital, then went out to the car and talked to the neurologist by phone from the parking lot. And they agreed that it was most likely a hemiplegic migraine, but said that it was very important that they actually physically see me. So now they’ve scheduled or rescheduled it, however you want to think of it, a face-to-face meeting a month from now. So I have to drive all the way back to the VA hospital.

Brianne: That’s very frustrating, contextually.

Crew Dog: Yes. So that’s where we are. The present day. I formally withdrew from my doctoral program for medical reasons. The department head was pretty compassionate about it. He managed to say a few of those ableist things that you don’t really like to hear, but he was trying and he meant well, which goes a long way.

Brianne: Yeah and another thing where you can usually tell,

Crew Dog: Right, right. And so here I am. I have become somewhat radicalized by chronic illness, and the Twitter chronic illness community.

Brianne: Which is perhaps like, more radical than many chronic illness communities, but not all I’m sure.

Crew Dog: And after the Crip Camp workshop experience this summer.

Brianne: Yeah.

Crew Dog: And so now here I am. I mostly stay at home, but I live someplace that I love, and I am becoming a chronic illness/disability advocate, and I don’t work. And that’s because I don’t have to, and I can’t. I want to. I don’t need to monetarily, I kind of need to psychologically, but I can’t.

Brianne: Yeah, it’s a really difficult thing that is also kind of overlooked a lot by general conversations about disabled people and work. I mean, I’m sure there are some people who are legitimately very happy doing nothing a lot of the time for all kinds of reasons, but I know that there are a lot more people who would really like to feel like there’s more purpose to what they’re doing. And it’s a combination of factors of how well symptom-management is going. So by their symptoms directly interfering, or whether the full-time job of managing symptoms is interfering or it’s such a long list of possible things, but it’s one of those things that’s so frustrating. Like you say, like psychologically, I want to work, and I want a community, and I want to be engaged and all of these things and the gap… this is another one of those things that I just like haven’t resolved in my head yet. But the gap of like, “How much of this is me and my body and the actual impairments that I have? And how much of this is my relationship to the culture? And like, what would it look like to have spaces where people were able to work?” Which I don’t know the answer to, but I think about a lot. And you’re mentioning of it makes me think about it a lot. And like you say, I think a lot of us will get sick and get radicalized or more radicalized and then look for ways to make meaning from that experience, which maybe is advocacy or something related. And it’s a weird thing of like… this can be so transformative that what else would I do? But also I’ve lost so many options that what else would I do? And it’s weird how those can overlap. I guess, if that makes sense.

Crew Dog: Right. Right. I agree with everything you just said, and also I am very energized to fight for the chronic illness, and disability community. And at the same time, if somebody magically waved a wand and I could be well enough, I’d like to go back to the research that I was doing when I got sick.

Brianne: Yeah. Very, very understandable. Of course, it’s a hard thing to reckon with, I guess, or to reconcile… two different words that start the same. Yeah. That’s my overall feeling. Do you… it’s also, I know, because so much of this is relatively recent. Do you feel like there’s… like you’ve found any kind of stasis so that you can start to think about what the next couple of months or the next year might look like? Or do you still feel like you’re very much like live putting out fires? So that, that is too… everything is too uncertain. I mean, everything’s too uncertain in the world, certainly, but with a body, it can be so hard when you’re like, “No, I, I have to focus so hard on stopping this reaction,” or whatever it is. It’s such a constant cycle. I think I’m losing coherence, but hopefully that question made some kind of sense to you.

Crew Dog: It absolutely made sense to me. I did feel like I was acceptably stable before they pulled Zantac off the market, and for me, that’s been a pretty critical Jenga piece that was ripped away. I am still working towards stability and for me, I’ve gone way down the mast cell rabbit hole, but I haven’t done probably enough research on connective tissue yet. And at the same time now I’ve got this new and pretty scary type of migraine. Because for people who aren’t familiar, you have to make sure that it’s not actually a TIA or a stroke which… I’ve had CT scans and MRIs and carotid ultrasounds and those look normal. So again, it’s the exclusionary diagnosis of, well, probably a hemiplegic migraine is making one whole side of my body weak. So it is still very much a 24/7 process. You know, I do feel encouraged about where we are with my mast cell treatment, but I needed to do better at managing the connective tissue issues. And I’m not going to be comfortable until I’ve done more research about the hemiplegic migraines.

Brianne: Yeah that makes sense. It’s a work in progress.

Crew Dog: Right. Right. And there’s a limited amount of energy that you can spend researching so many different conditions.

Brianne: Yeah. And integrating it, because it’s one thing to learn about something academically, and it’s another thing to then take that information that you read and then really think about it happening inside your own body.

Crew Dog: Right. Yeah. And fortunately to my awareness right now, I don’t have conditions that are fighting each other… that their treatments are contradicted for, you know? And so I’m not having to do that mental math about how to treat something that’s going to make something else worse.

Brianne: Yeah. Yeah. That’s a real thing. Yeah. Okay. Is there anything that we haven’t made it to, by chance? That we haven’t covered, that you know is on your mind, that you haven’t forgotten over the two hours we’ve been talking?

Crew Dog: Well, I mean, I was prepared for the conversation to just go where it went. So I don’t think I came into it with an agenda really.

Brianne: That’s typical. People usually don’t. Don’t worry. It’s not a quiz.

Crew Dog: Yeah, I don’t know. I mean, I guess I would say that if somebody who hears this is a veteran, and they haven’t applied for VA disability, I would strongly encourage them to do that because then they would have access to some care or some supplemental care. And I’ve also blogged about it, and spousal unit has blogged about it. You can see information on… there’s a lot of good information about applying for disability on The Military Guide blog as well, but just an encouragement. I know less than 1% of the population has served in the military, but if people find this podcast and it applies to them or a family member, I just want to emphasize that.

Brianne: Yeah. Make sure people know. Awesome. Well, thank you so much for taking this time to talk to me. I’m so glad we got to connect. I’m so excited to be talking to you again, but I’m so excited that we got to connect. Thank you.

Crew Dog: Thank you. I appreciate you spending your energy on me, and this was my very first podcast interview so…

Brianne: Woo. Here you are. On the airwaves.

Crew Dog: Yes.

Brianne: I don’t think that’s how podcasts work.

Crew Dog: And you are one of my very favorite Tweeps, and I am very excited to be interacting with you on this.

Brianne: Thank you very much. I’m so excited to like have the capacity to be like, “Sick people, talk to me! I love it so much.” And I’m so grateful that people share and that you’re sharing your story and your energy with me. Yay!

Crew Dog: And I am glad that you are trending better right now.

[guitar riff]

Drew: Thank you for listening to episode 74 of No End In Sight! You can find Crew Dog on Twitter and Facebook @onesickvet, they have a blog on their website onesickvet.com, and they are also on Instagram @one_sick_vet. You can find me on twitter @fibrofuckboy and if you want to support me directly and are in a position to, I have a Patreon where I post my poetry and other artistic endeavors at patreon.com/darkmagenta. You can find Brianne on twitter and instagram @bennessb, and you can find many more conversations about chronic illness on twitter @RTsFromTheVoid. And don’t forget you can sign up to support the show over at patreon.com/noendinsight. Or, if you want to support the show but don’t have a few bucks to spare, we’d be just as grateful if you left a podcast review on Apple Podcasts. Thanks for listening.

Looking for transcripts? Episodes 1-31, 54-57, and 66 through most recent episode are fully transcribed.
Scroll to Top