{"version":"1.0.0","segments":[{"startTime":22.109,"endTime":25.17,"body":"Hello, everyone, welcome back"},{"startTime":22.109,"endTime":25.17,"body":"to Slice of Pie."},{"startTime":25.379,"endTime":29.46,"body":"This week's episode, we are"},{"startTime":25.379,"endTime":29.46,"body":"exploring the social,"},{"startTime":29.526,"endTime":33.719,"body":"emotional side"},{"startTime":29.526,"endTime":33.719,"body":"of navigating infusions."},{"startTime":33.939,"endTime":37.649,"body":"I am joined with"},{"startTime":33.939,"endTime":37.649,"body":"a fellow primary immune"},{"startTime":37.716,"endTime":39.549,"body":"deficient patient, Christina."},{"startTime":39.616,"endTime":40.729,"body":"Hello, Christina."},{"startTime":41.07,"endTime":41.869,"body":"Hello, Brian."},{"startTime":42.359,"endTime":43.32,"body":"Nice to have you."},{"startTime":43.386,"endTime":44.909,"body":"Thank you so much"},{"startTime":43.386,"endTime":44.909,"body":"for joining us."},{"startTime":45.21,"endTime":46.179,"body":"Thank you for having me."},{"startTime":46.799,"endTime":47.299,"body":"Pleasure."},{"startTime":47.46,"endTime":49.59,"body":"Could you briefly"},{"startTime":47.46,"endTime":49.59,"body":"tell me about yourself?"},{"startTime":51.27,"endTime":51.77,"body":"Sure."},{"startTime":52.53,"endTime":55.74,"body":"So as you mentioned,"},{"startTime":52.53,"endTime":55.74,"body":"I am a primary"},{"startTime":55.806,"endTime":58.289,"body":"immune deficient patient."},{"startTime":59.25,"endTime":63.03,"body":"I was diagnosed when I was"},{"startTime":59.25,"endTime":63.03,"body":"about 12, 11 or 12 years old."},{"startTime":63.42,"endTime":68.31,"body":"And I mean, up until then,"},{"startTime":63.42,"endTime":68.31,"body":"my entire childhood was fraught"},{"startTime":68.376,"endTime":70.379,"body":"with sicknesses in"},{"startTime":68.376,"endTime":70.379,"body":"and out of hospitals,"},{"startTime":70.65,"endTime":71.879,"body":"bronchitis, pneumonia."},{"startTime":73.12,"endTime":78.069,"body":"The like, and then so finally,"},{"startTime":73.12,"endTime":78.069,"body":"around the age of 11 or 12,"},{"startTime":78.136,"endTime":82.48,"body":"I became I got diagnosed,"},{"startTime":78.136,"endTime":82.48,"body":"I started treatments"},{"startTime":82.719,"endTime":87.909,"body":"doing IBG, so immunoglobulin"},{"startTime":82.719,"endTime":87.909,"body":"therapies through IV at the"},{"startTime":87.976,"endTime":89.349,"body":"hospital once a month."},{"startTime":90.64,"endTime":94.719,"body":"That continued for"},{"startTime":90.64,"endTime":94.719,"body":"about 15 years."},{"startTime":95.29,"endTime":99.549,"body":"And then I started looking into"},{"startTime":95.29,"endTime":99.549,"body":"the possibility of doing"},{"startTime":99.616,"endTime":102.609,"body":"subcutaneous"},{"startTime":99.616,"endTime":102.609,"body":"treatments switched over."},{"startTime":102.676,"endTime":106.12,"body":"And so that's where"},{"startTime":102.676,"endTime":106.12,"body":"I am at now also."},{"startTime":107.14,"endTime":110.829,"body":"So outside of primary"},{"startTime":107.14,"endTime":110.829,"body":"immune deficiency, what does"},{"startTime":110.896,"endTime":112.14,"body":"your life currently look like?"},{"startTime":112.206,"endTime":114.67,"body":"What what is work?"},{"startTime":114.736,"endTime":115.739,"body":"What is it?"},{"startTime":115.909,"endTime":119.019,"body":"It is a weird question"},{"startTime":115.909,"endTime":119.019,"body":"to ask in the current context,"},{"startTime":120.579,"endTime":122.73,"body":"but it nonetheless."},{"startTime":124.51,"endTime":127.59,"body":"So my life right now is"},{"startTime":124.51,"endTime":127.59,"body":"basically like a hermit."},{"startTime":127.656,"endTime":129.189,"body":"I don't leave the house."},{"startTime":129.56,"endTime":133.87,"body":"OK, so I'm an"},{"startTime":129.56,"endTime":133.87,"body":"environmental consultant"},{"startTime":135.909,"endTime":138.039,"body":"in a private consulting firm."},{"startTime":138.25,"endTime":138.75,"body":"Awesome."},{"startTime":139.689,"endTime":143.349,"body":"And mostly for"},{"startTime":139.689,"endTime":143.349,"body":"the mining industry."},{"startTime":144.49,"endTime":148.719,"body":"I do enjoy"},{"startTime":144.49,"endTime":148.719,"body":"extracurriculars like music."},{"startTime":148.786,"endTime":151.539,"body":"So I play violin and I'm"},{"startTime":148.786,"endTime":151.539,"body":"playing a couple of bands."},{"startTime":153.879,"endTime":158.56,"body":"I've recently become a plant"},{"startTime":153.879,"endTime":158.56,"body":"mama thanks to the PennyMac."},{"startTime":160.33,"endTime":163.27,"body":"And yeah, just basically, like I"},{"startTime":160.33,"endTime":163.27,"body":"said, spent a lot of"},{"startTime":163.336,"endTime":167.33,"body":"time at home, try"},{"startTime":163.336,"endTime":167.33,"body":"to get outside when possible."},{"startTime":167.396,"endTime":171.009,"body":"I really enjoy camping"},{"startTime":167.396,"endTime":171.009,"body":"and being outdoors."},{"startTime":171.076,"endTime":177.039,"body":"So in the summertime that's"},{"startTime":171.076,"endTime":177.039,"body":"that's a big pastime of"},{"startTime":177.106,"endTime":177.969,"body":"mine as well."},{"startTime":178.37,"endTime":178.99,"body":"Awesome."},{"startTime":179.259,"endTime":179.77,"body":"All right."},{"startTime":179.836,"endTime":184.96,"body":"I have to follow up questions"},{"startTime":179.836,"endTime":184.96,"body":"one and I now realize it might"},{"startTime":185.026,"endTime":191.61,"body":"be a it might be a pretty"},{"startTime":185.026,"endTime":191.61,"body":"bad question, but, uh, woohoo!"},{"startTime":191.8,"endTime":198.069,"body":"Of all your plant babies,"},{"startTime":191.8,"endTime":198.069,"body":"which is your favorite and I"},{"startTime":198.136,"endTime":200.77,"body":"realize it's like maybe this is"},{"startTime":198.136,"endTime":200.77,"body":"a bad way, but."},{"startTime":200.836,"endTime":201.969,"body":"But like what?"},{"startTime":202.18,"endTime":204.43,"body":"Which one stands out or a few."},{"startTime":205.96,"endTime":209.56,"body":"So I do have a fiddly fig that"},{"startTime":205.96,"endTime":209.56,"body":"I'm pretty proud that I've"},{"startTime":209.626,"endTime":212.83,"body":"actually kept alive a little"},{"startTime":209.626,"endTime":212.83,"body":"bit history there."},{"startTime":212.896,"endTime":217.689,"body":"I had a fiddly fig a few years"},{"startTime":212.896,"endTime":217.689,"body":"ago and it died within a"},{"startTime":217.756,"endTime":218.62,"body":"couple of months."},{"startTime":219.25,"endTime":222.4,"body":"And so I'm pretty proud of"},{"startTime":219.25,"endTime":222.4,"body":"myself for for the fact that"},{"startTime":222.466,"endTime":224.919,"body":"this one is still alive and"},{"startTime":222.466,"endTime":224.919,"body":"actually growing new leaves."},{"startTime":225.37,"endTime":229.09,"body":"So also because it's called a"},{"startTime":225.37,"endTime":229.09,"body":"fiddly fig and I and I play the"},{"startTime":229.156,"endTime":230.979,"body":"violin like the fiddle."},{"startTime":231.046,"endTime":236.05,"body":"So I feel like some some sort"},{"startTime":231.046,"endTime":236.05,"body":"of connection there that"},{"startTime":236.116,"endTime":238.93,"body":"actually Berbick because I"},{"startTime":236.116,"endTime":238.93,"body":"was wondering, why did she out"},{"startTime":238.996,"endTime":242.56,"body":"of all the possible instruments"},{"startTime":238.996,"endTime":242.56,"body":"y y y violin."},{"startTime":243.71,"endTime":247.52,"body":"Oh, that's a good question that"},{"startTime":243.71,"endTime":247.52,"body":"goes back to when I 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far."},{"startTime":288.319,"endTime":291.41,"body":"And I want to acknowledge"},{"startTime":288.319,"endTime":291.41,"body":"before we get into it that"},{"startTime":291.476,"endTime":296.54,"body":"infusions are different for"},{"startTime":291.476,"endTime":296.54,"body":"everyone and how people"},{"startTime":296.606,"endTime":299.269,"body":"navigate them, how they"},{"startTime":296.606,"endTime":299.269,"body":"experience them, how they"},{"startTime":299.529,"endTime":304.399,"body":"are emotionally, spiritually,"},{"startTime":299.529,"endTime":304.399,"body":"psychologically and physically"},{"startTime":304.61,"endTime":307.92,"body":"react to infusions is"},{"startTime":304.61,"endTime":307.92,"body":"all very different."},{"startTime":308.06,"endTime":311.72,"body":"I want to welcome that"},{"startTime":308.06,"endTime":311.72,"body":"diversity and acknowledge that"},{"startTime":311.786,"endTime":315.16,"body":"this is your story and"},{"startTime":311.786,"endTime":315.16,"body":"your infusion journey."},{"startTime":315.319,"endTime":318.92,"body":"Christina and other people"},{"startTime":315.319,"endTime":318.92,"body":"might have some areas that they"},{"startTime":318.986,"endTime":320.81,"body":"overlap and they"},{"startTime":318.986,"endTime":320.81,"body":"have resonance,"},{"startTime":320.876,"endTime":323.81,"body":"and that's great, but"},{"startTime":320.876,"endTime":323.81,"body":"it's one experience of many."},{"startTime":324.949,"endTime":329.149,"body":"So with that in mind,"},{"startTime":324.949,"endTime":329.149,"body":"I'm wondering I'm wondering if"},{"startTime":329.216,"endTime":332.209,"body":"you can tell me"},{"startTime":329.216,"endTime":332.209,"body":"about the experience of"},{"startTime":332.276,"endTime":333.68,"body":"your first infusions."},{"startTime":334.639,"endTime":335.139,"body":"Sure."},{"startTime":335.87,"endTime":336.649,"body":"So"},{"startTime":338.379,"endTime":346.579,"body":"I grew up in a somewhat rural"},{"startTime":338.379,"endTime":346.579,"body":"ish town, so population of"},{"startTime":346.819,"endTime":352.129,"body":"forty five thousand, not so"},{"startTime":346.819,"endTime":352.129,"body":"tiny, but far from any"},{"startTime":352.49,"endTime":355.149,"body":"significant health"},{"startTime":352.49,"endTime":355.149,"body":"centers."},{"startTime":355.279,"endTime":355.819,"body":"Yeah."},{"startTime":356.36,"endTime":362.149,"body":"And so when I was diagnosed,"},{"startTime":356.36,"endTime":362.149,"body":"the testing that was done that"},{"startTime":362.216,"endTime":367.67,"body":"allowed for the diagnosis was"},{"startTime":362.216,"endTime":367.67,"body":"at a children's hospital about"},{"startTime":367.736,"endTime":369.019,"body":"an eight hour drive away."},{"startTime":369.319,"endTime":370.16,"body":"Oh, wow."},{"startTime":371.449,"endTime":372.5,"body":"And so,"},{"startTime":374.509,"endTime":378.439,"body":"you know, I was diagnosed,"},{"startTime":374.509,"endTime":378.439,"body":"I think, like late summer or"},{"startTime":378.506,"endTime":379.879,"body":"early fall around there."},{"startTime":380.87,"endTime":384.079,"body":"And then they decided that we"},{"startTime":380.87,"endTime":384.079,"body":"that I would need to"},{"startTime":384.146,"endTime":386.6,"body":"have treatments,"},{"startTime":384.146,"endTime":386.6,"body":"the IV treatments."},{"startTime":387.62,"endTime":391.61,"body":"However, they wanted the"},{"startTime":387.62,"endTime":391.61,"body":"treatments to be in their"},{"startTime":391.676,"endTime":395.18,"body":"hospital for, I think,"},{"startTime":391.676,"endTime":395.18,"body":"the first three treatments,"},{"startTime":395.246,"endTime":395.949,"body":"monthly treatments."},{"startTime":396.016,"endTime":401.75,"body":"So for the first three once"},{"startTime":396.016,"endTime":401.75,"body":"a month, we had to drive down"},{"startTime":401.899,"endTime":405.8,"body":"as a family to the hospital to"},{"startTime":401.899,"endTime":405.8,"body":"take do the eight hour drive,"},{"startTime":406.189,"endTime":409.61,"body":"have the treatment for,"},{"startTime":406.189,"endTime":409.61,"body":"I don't know, four hours"},{"startTime":409.676,"endTime":410.176,"body":"or so,"},{"startTime":411.56,"endTime":414.62,"body":"probably stay overnight and"},{"startTime":411.56,"endTime":414.62,"body":"then drive all the way back."},{"startTime":414.686,"endTime":419.089,"body":"So the first few treatments"},{"startTime":414.686,"endTime":419.089,"body":"were for pretty long."},{"startTime":419.779,"endTime":420.819,"body":"Yeah."},{"startTime":422.36,"endTime":426.92,"body":"And then after that, I was"},{"startTime":422.36,"endTime":426.92,"body":"allowed to do the treatments at"},{"startTime":426.986,"endTime":427.91,"body":"the regional hospital."},{"startTime":428.81,"endTime":429.31,"body":"Mm hmm."},{"startTime":430.37,"endTime":434.48,"body":"I'm wondering, it was a long"},{"startTime":430.37,"endTime":434.48,"body":"time ago, but I'm wondering"},{"startTime":436.189,"endTime":440.149,"body":"that how did you feel on that"},{"startTime":436.189,"endTime":440.149,"body":"like eight hour drive to the"},{"startTime":440.216,"endTime":440.716,"body":"hospital?"},{"startTime":440.783,"endTime":441.283,"body":"Do you remember that?"},{"startTime":442.97,"endTime":446.629,"body":"Well, I mean, as a kid,"},{"startTime":442.97,"endTime":446.629,"body":"it's kind of like a"},{"startTime":446.696,"endTime":447.41,"body":"family trip."},{"startTime":448.079,"endTime":448.579,"body":"Yeah."},{"startTime":448.646,"endTime":450.379,"body":"So there's"},{"startTime":448.646,"endTime":450.379,"body":"some excitement there."},{"startTime":450.446,"endTime":453.829,"body":"And the children's hospital is"},{"startTime":450.446,"endTime":453.829,"body":"obviously also very exciting"},{"startTime":454.819,"endTime":458.93,"body":"because it's brightly colored"},{"startTime":454.819,"endTime":458.93,"body":"and lots of cool things to look"},{"startTime":458.996,"endTime":461.24,"body":"at and also because they"},{"startTime":458.996,"endTime":461.24,"body":"have video games."},{"startTime":461.66,"endTime":462.16,"body":"Right."},{"startTime":462.379,"endTime":463.0,"body":"Sort I've."},{"startTime":463.279,"endTime":464.86,"body":"Yeah, absolutely."},{"startTime":466.04,"endTime":470.0,"body":"And so it was actually like"},{"startTime":466.04,"endTime":470.0,"body":"they did a really good job of,"},{"startTime":470.066,"endTime":473.329,"body":"I think,"},{"startTime":470.066,"endTime":473.329,"body":"making young 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of"},{"startTime":544.129,"endTime":547.279,"body":"compartmentalize your your"},{"startTime":547.346,"endTime":549.759,"body":"feelings about it and just sort"},{"startTime":547.346,"endTime":549.759,"body":"of get through it, you know,"},{"startTime":549.826,"endTime":550.94,"body":"because, you know, it has"},{"startTime":549.826,"endTime":550.94,"body":"to be done."},{"startTime":551.36,"endTime":552.529,"body":"Mm hmm."},{"startTime":553.94,"endTime":555.049,"body":"Could you tell"},{"startTime":553.94,"endTime":555.049,"body":"me more about that?"},{"startTime":555.116,"endTime":558.98,"body":"Like just getting through it as"},{"startTime":555.116,"endTime":558.98,"body":"during the first few"},{"startTime":559.399,"endTime":560.899,"body":"years, like."},{"startTime":561.86,"endTime":566.929,"body":"Well, so I guess, you know,"},{"startTime":561.86,"endTime":566.929,"body":"in the first few years, one of"},{"startTime":566.996,"endTime":570.83,"body":"the biggest aspects was that"},{"startTime":566.996,"endTime":570.83,"body":"obviously I had to do it during"},{"startTime":570.896,"endTime":575.059,"body":"school hours, so I had"},{"startTime":570.896,"endTime":575.059,"body":"to be away from school."},{"startTime":575.126,"endTime":578.36,"body":"And then you get a whole bunch"},{"startTime":575.126,"endTime":578.36,"body":"of kids being curious about,"},{"startTime":578.426,"endTime":581.299,"body":"hey, where were you the"},{"startTime":578.426,"endTime":581.299,"body":"other day, especially when it's"},{"startTime":581.366,"endTime":583.46,"body":"happening on such"},{"startTime":581.366,"endTime":583.46,"body":"a frequent basis."},{"startTime":583.639,"endTime":584.139,"body":"Mm hmm."},{"startTime":585.289,"endTime":588.47,"body":"And that was also the point at"},{"startTime":585.289,"endTime":588.47,"body":"which I discovered that I"},{"startTime":588.536,"endTime":591.529,"body":"didn't really like telling"},{"startTime":588.536,"endTime":591.529,"body":"people about"},{"startTime":591.596,"endTime":592.669,"body":"my immune deficiency."},{"startTime":592.879,"endTime":593.379,"body":"Mm hmm."},{"startTime":594.019,"endTime":595.549,"body":"Because at that point in time."},{"startTime":595.616,"endTime":599.539,"body":"So I think that was like"},{"startTime":595.616,"endTime":599.539,"body":"grade six, grade seven for me."},{"startTime":599.606,"endTime":603.59,"body":"And that was about, you know,"},{"startTime":599.606,"endTime":603.59,"body":"near the height of"},{"startTime":603.656,"endTime":604.509,"body":"the AIDS epidemic."},{"startTime":605.5,"endTime":609.22,"body":"Yeah, right,"},{"startTime":605.5,"endTime":609.22,"body":"so telling people,"},{"startTime":609.286,"endTime":612.639,"body":"telling classmates in grade"},{"startTime":609.286,"endTime":612.639,"body":"seven and eight or grade six"},{"startTime":612.706,"endTime":616.0,"body":"and seven that you have an"},{"startTime":612.706,"endTime":616.0,"body":"immune deficiency, it doesn't"},{"startTime":616.066,"endTime":619.299,"body":"matter that it's not"},{"startTime":616.066,"endTime":619.299,"body":"an acquired one."},{"startTime":619.366,"endTime":620.259,"body":"It's a genetic one."},{"startTime":620.539,"endTime":621.08,"body":"Mm hmm."},{"startTime":621.789,"endTime":625.57,"body":"A lot of kids all of a sudden"},{"startTime":621.789,"endTime":625.57,"body":"thought that I had AIDS."},{"startTime":625.99,"endTime":626.529,"body":"Mm hmm."},{"startTime":627.37,"endTime":629.269,"body":"Which which"},{"startTime":627.37,"endTime":629.269,"body":"was pretty tough."},{"startTime":629.336,"endTime":629.836,"body":"Yeah."},{"startTime":629.929,"endTime":630.909,"body":"Yeah, yeah."},{"startTime":631.149,"endTime":632.409,"body":"Ten foot pole kind of thing."},{"startTime":632.59,"endTime":633.61,"body":"Yeah."},{"startTime":634.33,"endTime":634.83,"body":"Yeah."},{"startTime":634.896,"endTime":637.059,"body":"So they they did change how"},{"startTime":634.896,"endTime":637.059,"body":"they interacted with you."},{"startTime":637.389,"endTime":637.95,"body":"Some of them."},{"startTime":638.016,"endTime":638.516,"body":"Yeah."},{"startTime":639.129,"endTime":641.679,"body":"And it was just the"},{"startTime":639.129,"endTime":641.679,"body":"initial reaction of."},{"startTime":642.46,"endTime":647.379,"body":"Kind of like discussed,"},{"startTime":642.46,"endTime":647.379,"body":"you know, that was kind of when"},{"startTime":647.446,"endTime":651.94,"body":"I stopped telling people about"},{"startTime":647.446,"endTime":651.94,"body":"my immune deficiency."},{"startTime":652.83,"endTime":658.24,"body":"Yeah, I have to imagine that"},{"startTime":652.83,"endTime":658.24,"body":"impacted how like what I'm"},{"startTime":658.306,"endTime":659.12,"body":"learning through this."},{"startTime":659.186,"endTime":663.22,"body":"This podcast is that disclosure"},{"startTime":659.186,"endTime":663.22,"body":"is certainly in my life a"},{"startTime":663.286,"endTime":667.33,"body":"complicated thing, but also"},{"startTime":663.286,"endTime":667.33,"body":"in everyone's life."},{"startTime":667.396,"endTime":670.659,"body":"And it sounds like that was"},{"startTime":667.396,"endTime":670.659,"body":"very formative to your"},{"startTime":672.1,"endTime":673.45,"body":"experience with disclosure."},{"startTime":673.779,"endTime":677.83,"body":"Well, I was I was pretty lucky"},{"startTime":673.779,"endTime":677.83,"body":"to have, like, a really"},{"startTime":677.896,"endTime":681.49,"body":"supportive family and a very"},{"startTime":677.896,"endTime":681.49,"body":"supportive group of"},{"startTime":681.556,"endTime":682.95,"body":"close friends still."},{"startTime":684.37,"endTime":687.1,"body":"So I just kind of tried to"},{"startTime":684.37,"endTime":687.1,"body":"forget about the other people"},{"startTime":688.0,"endTime":689.95,"body":"and focus on"},{"startTime":688.0,"endTime":689.95,"body":"what I did have."},{"startTime":690.32,"endTime":690.82,"body":"Hmm."},{"startTime":691.779,"endTime":697.99,"body":"But still, yeah, I for a long"},{"startTime":691.779,"endTime":697.99,"body":"time after that, I did not"},{"startTime":698.056,"endTime":701.44,"body":"disclose my condition to most"},{"startTime":698.056,"endTime":701.44,"body":"people that I met."},{"startTime":702.039,"endTime":702.6,"body":"Yeah."},{"startTime":703.12,"endTime":707.139,"body":"Um, and with that group of"},{"startTime":703.12,"endTime":707.139,"body":"close friends, did you, did you"},{"startTime":707.206,"endTime":710.71,"body":"disclose to them or um and"},{"startTime":707.206,"endTime":710.71,"body":"if so, did they react"},{"startTime":710.86,"endTime":713.74,"body":"differently or like"},{"startTime":710.86,"endTime":713.74,"body":"what was the difference"},{"startTime":713.806,"endTime":715.57,"body":"between those two."},{"startTime":716.289,"endTime":717.879,"body":"I think that they."},{"startTime":718.97,"endTime":723.2,"body":"They just reacted more"},{"startTime":718.97,"endTime":723.2,"body":"patiently to begin with, so it"},{"startTime":723.266,"endTime":726.379,"body":"gave me a chance to actually"},{"startTime":723.266,"endTime":726.379,"body":"explain or try to explain as"},{"startTime":726.446,"endTime":730.429,"body":"well as a, you know, sixth or"},{"startTime":726.446,"endTime":730.429,"body":"seventh grader could what was"},{"startTime":730.496,"endTime":731.809,"body":"actually going on."},{"startTime":731.876,"endTime":734.149,"body":"And that, no, it's not"},{"startTime":731.876,"endTime":734.149,"body":"the same thing as what we"},{"startTime":734.216,"endTime":735.529,"body":"learn in school."},{"startTime":735.72,"endTime":736.639,"body":"It's something different."},{"startTime":736.706,"endTime":738.429,"body":"You can't catch it"},{"startTime":736.706,"endTime":738.429,"body":"for me, so don't worry."},{"startTime":738.86,"endTime":739.36,"body":"Yeah."},{"startTime":739.426,"endTime":741.429,"body":"You know, and then"},{"startTime":739.426,"endTime":741.429,"body":"after that, it was fine."},{"startTime":741.496,"endTime":743.419,"body":"It's just, you know, the other"},{"startTime":741.496,"endTime":743.419,"body":"kids don't give you a chance"},{"startTime":743.486,"endTime":744.129,"body":"to explain that."},{"startTime":745.73,"endTime":750.98,"body":"Yes, it is like when you spell"},{"startTime":745.73,"endTime":750.98,"body":"it out like that, it's a really"},{"startTime":751.046,"endTime":755.149,"body":"small difference, but it"},{"startTime":751.046,"endTime":755.149,"body":"is a very important difference."},{"startTime":755.216,"endTime":758.389,"body":"And it is something that also I"},{"startTime":755.216,"endTime":758.389,"body":"look for as well, is like when"},{"startTime":758.456,"endTime":762.679,"body":"I am disclosing even now as"},{"startTime":758.456,"endTime":762.679,"body":"an adult, when I'm disclosing"},{"startTime":762.746,"endTime":766.519,"body":"what is the space that people"},{"startTime":762.746,"endTime":766.519,"body":"give me, whether that space"},{"startTime":766.586,"endTime":767.809,"body":"opens or closes."},{"startTime":767.876,"endTime":771.289,"body":"And if it closes, I think"},{"startTime":767.876,"endTime":771.289,"body":"like, yeah, it's a very"},{"startTime":772.039,"endTime":775.039,"body":"it also makes me feel"},{"startTime":772.039,"endTime":775.039,"body":"uncomfortable as well."},{"startTime":775.759,"endTime":776.259,"body":"Yeah."},{"startTime":776.389,"endTime":778.07,"body":"And you spoke to the."},{"startTime":780.07,"endTime":784.179,"body":"The changes and impact"},{"startTime":780.07,"endTime":784.179,"body":"on your life after starting"},{"startTime":784.246,"endTime":787.059,"body":"the infusions, the benefits"},{"startTime":784.246,"endTime":787.059,"body":"of it, I'm wondering if you"},{"startTime":787.126,"endTime":791.62,"body":"could speak more to, like how"},{"startTime":787.126,"endTime":791.62,"body":"the your first few years"},{"startTime":791.686,"endTime":794.6,"body":"of infusing, um,"},{"startTime":791.686,"endTime":794.6,"body":"impacted your life?"},{"startTime":795.61,"endTime":798.58,"body":"I mean, like, I was"},{"startTime":795.61,"endTime":798.58,"body":"just sick a lot less."},{"startTime":801.44,"endTime":805.759,"body":"I think it also brought me"},{"startTime":801.44,"endTime":805.759,"body":"closer to my family as a kind"},{"startTime":805.826,"endTime":808.309,"body":"of like a shared experience."},{"startTime":810.679,"endTime":815.75,"body":"You know, especially after"},{"startTime":810.679,"endTime":815.75,"body":"having negative reactions from"},{"startTime":815.816,"endTime":819.62,"body":"classmates and and knowing that"},{"startTime":815.816,"endTime":819.62,"body":"my family is my support system"},{"startTime":819.686,"endTime":823.61,"body":"now for I mean,"},{"startTime":819.686,"endTime":823.61,"body":"always was, but especially now."},{"startTime":823.676,"endTime":827.299,"body":"And so like this is this"},{"startTime":823.676,"endTime":827.299,"body":"is a thing that my family knows"},{"startTime":827.366,"endTime":829.61,"body":"about and I know about and."},{"startTime":830.59,"endTime":833.559,"body":"It's you know, they're my"},{"startTime":830.59,"endTime":833.559,"body":"support system on this one."},{"startTime":833.86,"endTime":834.37,"body":"Mm hmm."},{"startTime":835.33,"endTime":839.47,"body":"And I so I"},{"startTime":835.33,"endTime":839.47,"body":"think that brought some level"},{"startTime":839.536,"endTime":840.669,"body":"of additional closeness."},{"startTime":841.24,"endTime":842.049,"body":"That's wonderful."},{"startTime":843.19,"endTime":846.22,"body":"I wonder in what ways did they"},{"startTime":843.19,"endTime":846.22,"body":"provide support during your"},{"startTime":846.286,"endTime":846.799,"body":"infusions?"},{"startTime":847.179,"endTime":850.299,"body":"Can you think of any examples"},{"startTime":847.179,"endTime":850.299,"body":"that stand out as meaningful?"},{"startTime":851.62,"endTime":855.129,"body":"Oh, sometimes they would hang"},{"startTime":851.62,"endTime":855.129,"body":"around a little bit for a while"},{"startTime":856.149,"endTime":858.62,"body":"or bring snacks."},{"startTime":859.909,"endTime":860.409,"body":"Yeah,"},{"startTime":862.09,"endTime":866.019,"body":"I think sometimes we would"},{"startTime":862.09,"endTime":866.019,"body":"actually go out and rent movies"},{"startTime":866.086,"endTime":868.529,"body":"from from Blockbuster, if you"},{"startTime":866.086,"endTime":868.529,"body":"remember those days,"},{"startTime":869.169,"endTime":871.48,"body":"to actually bring and watch."},{"startTime":873.309,"endTime":875.11,"body":"So that was that was an event,"},{"startTime":876.73,"endTime":878.259,"body":"you know,"},{"startTime":876.73,"endTime":878.259,"body":"related to the treatments."},{"startTime":878.71,"endTime":879.399,"body":"Mm hmm."},{"startTime":879.98,"endTime":882.429,"body":"It sounds like they went"},{"startTime":879.98,"endTime":882.429,"body":"out of their way to like"},{"startTime":882.496,"endTime":883.659,"body":"normalize it."},{"startTime":883.726,"endTime":884.649,"body":"Like make it."},{"startTime":886.08,"endTime":889.899,"body":"Would you say that is a a fair"},{"startTime":886.08,"endTime":889.899,"body":"like in the sense of making it"},{"startTime":889.966,"endTime":892.75,"body":"kind of a human experience,"},{"startTime":889.966,"endTime":892.75,"body":"not just fully focused on"},{"startTime":893.74,"endTime":894.24,"body":"infusions?"},{"startTime":895.029,"endTime":897.1,"body":"Yeah, no, I would say"},{"startTime":895.029,"endTime":897.1,"body":"that's pretty accurate."},{"startTime":897.166,"endTime":898.87,"body":"Yeah, that's awesome."},{"startTime":901.09,"endTime":902.639,"body":"Hey, everyone, I just"},{"startTime":901.09,"endTime":902.639,"body":"want to jump in here."},{"startTime":902.706,"endTime":905.32,"body":"We are talking a lot about the"},{"startTime":902.706,"endTime":905.32,"body":"complexities of living with"},{"startTime":905.386,"endTime":906.789,"body":"primary immune deficiency."},{"startTime":907.059,"endTime":911.049,"body":"And I wanted to make sure that"},{"startTime":907.059,"endTime":911.049,"body":"you knew that Sepo offers a"},{"startTime":911.116,"endTime":914.679,"body":"wide range of services tailored"},{"startTime":911.116,"endTime":914.679,"body":"to meet the needs of immuno"},{"startTime":914.746,"endTime":918.34,"body":"deficient patients like you,"},{"startTime":914.746,"endTime":918.34,"body":"me in particular."},{"startTime":918.406,"endTime":921.82,"body":"I wanted to mention their peer"},{"startTime":918.406,"endTime":921.82,"body":"support program, which matches"},{"startTime":921.886,"endTime":925.029,"body":"patients or caregivers with"},{"startTime":921.886,"endTime":925.029,"body":"people that have lived"},{"startTime":925.096,"endTime":929.59,"body":"experience of navigating the"},{"startTime":925.096,"endTime":929.59,"body":"complexities of having"},{"startTime":929.95,"endTime":931.36,"body":"primary immune deficiency."},{"startTime":931.539,"endTime":935.409,"body":"It's a great program for people"},{"startTime":931.539,"endTime":935.409,"body":"who are newly diagnosed or"},{"startTime":935.649,"endTime":938.48,"body":"those who are just looking for"},{"startTime":935.649,"endTime":938.48,"body":"a little extra support."},{"startTime":938.546,"endTime":941.35,"body":"If this sounds like a program"},{"startTime":938.546,"endTime":941.35,"body":"that you would like to"},{"startTime":941.416,"endTime":945.34,"body":"connect with, you can reach out"},{"startTime":941.416,"endTime":945.34,"body":"today by emailing support"},{"startTime":945.406,"endTime":950.44,"body":"that support, that is support"},{"startTime":945.406,"endTime":950.44,"body":"at IPO gutsier."},{"startTime":950.59,"endTime":954.07,"body":"The best part is they are"},{"startTime":950.59,"endTime":954.07,"body":"committed to making sure you"},{"startTime":954.136,"endTime":956.44,"body":"have a response within"},{"startTime":954.136,"endTime":956.44,"body":"48 hours."},{"startTime":959.83,"endTime":963.879,"body":"So kind of zooming forward,"},{"startTime":959.83,"endTime":963.879,"body":"as it were, we were talking"},{"startTime":963.946,"endTime":967.779,"body":"about the first few years of"},{"startTime":963.946,"endTime":967.779,"body":"you infusing, I'd like to jump"},{"startTime":967.846,"endTime":971.529,"body":"forward a little bit to like"},{"startTime":967.846,"endTime":971.529,"body":"maybe five years after were"},{"startTime":971.596,"endTime":973.45,"body":"after you started roughly."},{"startTime":975.039,"endTime":979.69,"body":"I know for me that"},{"startTime":975.039,"endTime":979.69,"body":"as I transitioned into being a"},{"startTime":979.756,"endTime":983.049,"body":"young adult, the, um,"},{"startTime":979.756,"endTime":983.049,"body":"my experience of effusions"},{"startTime":983.379,"endTime":985.21,"body":"changed a little bit."},{"startTime":985.276,"endTime":988.389,"body":"Would you say that that is a"},{"startTime":985.276,"endTime":988.389,"body":"similar experience for you?"},{"startTime":988.809,"endTime":990.129,"body":"Definitely, yeah."},{"startTime":992.259,"endTime":997.12,"body":"So moving from high school"},{"startTime":992.259,"endTime":997.12,"body":"to university, moving away"},{"startTime":997.186,"endTime":997.809,"body":"from home,"},{"startTime":999.46,"endTime":1004.98,"body":"I went from having health care"},{"startTime":999.46,"endTime":1004.98,"body":"that I basically relied on"},{"startTime":1005.046,"endTime":1007.799,"body":"other adults to provide"},{"startTime":1005.046,"endTime":1007.799,"body":"for me, like make"},{"startTime":1007.866,"endTime":1008.82,"body":"the decisions."},{"startTime":1008.886,"endTime":1012.299,"body":"And I you know, it got to the"},{"startTime":1008.886,"endTime":1012.299,"body":"point where I knew the health"},{"startTime":1012.366,"endTime":1014.94,"body":"care team well enough over"},{"startTime":1012.366,"endTime":1014.94,"body":"those years that it was a"},{"startTime":1015.006,"endTime":1016.98,"body":"very 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or"},{"startTime":1039.996,"endTime":1042.66,"body":"going through high school."},{"startTime":1042.98,"endTime":1048.779,"body":"Um, you know, I would I didn't"},{"startTime":1042.98,"endTime":1048.779,"body":"really ever look forward to the"},{"startTime":1049.65,"endTime":1051.259,"body":"to the infusions anymore."},{"startTime":1051.326,"endTime":1055.109,"body":"I was just kind of I learned to"},{"startTime":1051.326,"endTime":1055.109,"body":"kind of enjoy that time with"},{"startTime":1055.176,"endTime":1058.769,"body":"the nurses and and the health"},{"startTime":1055.176,"endTime":1058.769,"body":"care team as I was growing up."},{"startTime":1059.4,"endTime":1062.009,"body":"Um, and yeah, like"},{"startTime":1059.4,"endTime":1062.009,"body":"you said, really normalize it."},{"startTime":1063.809,"endTime":1066.24,"body":"And then as soon as I got"},{"startTime":1063.809,"endTime":1066.24,"body":"to university, it was like"},{"startTime":1066.75,"endTime":1069.539,"body":"having to fend for myself and"},{"startTime":1066.75,"endTime":1069.539,"body":"not knowing quite what to say,"},{"startTime":1069.606,"endTime":1074.549,"body":"not knowing quite what to do,"},{"startTime":1069.606,"endTime":1074.549,"body":"you know, and because I"},{"startTime":1074.616,"endTime":1077.68,"body":"actually switched universities,"},{"startTime":1074.616,"endTime":1077.68,"body":"so I,"},{"startTime":1078.279,"endTime":1080.22,"body":"I transferred to"},{"startTime":1078.279,"endTime":1080.22,"body":"a different university halfway"},{"startTime":1080.286,"endTime":1081.0,"body":"through my undergrad."},{"startTime":1081.066,"endTime":1084.96,"body":"So I was actually moving around"},{"startTime":1081.066,"endTime":1084.96,"body":"every two to three years."},{"startTime":1085.119,"endTime":1085.68,"body":"Oh wow."},{"startTime":1085.839,"endTime":1090.18,"body":"Um, for about ten or"},{"startTime":1085.839,"endTime":1090.18,"body":"or so years."},{"startTime":1092.49,"endTime":1094.92,"body":"And so there was never really a"},{"startTime":1092.49,"endTime":1094.92,"body":"chance to get to know"},{"startTime":1094.986,"endTime":1095.64,"body":"the teams."},{"startTime":1097.319,"endTime":1101.519,"body":"It was just like I"},{"startTime":1097.319,"endTime":1101.519,"body":"would show up and feel"},{"startTime":1101.586,"endTime":1104.759,"body":"anxious and uncomfortable."},{"startTime":1105.14,"endTime":1105.779,"body":"Mm."},{"startTime":1106.17,"endTime":1109.559,"body":"And just like not really at"},{"startTime":1106.17,"endTime":1109.559,"body":"ease and not really know what's"},{"startTime":1109.626,"endTime":1111.99,"body":"going to happen, just kind of"},{"startTime":1109.626,"endTime":1111.99,"body":"like sit there and get through"},{"startTime":1112.056,"endTime":1115.94,"body":"it and you know,"},{"startTime":1112.056,"endTime":1115.94,"body":"hope that everything goes OK."},{"startTime":1117.75,"endTime":1121.65,"body":"Usually I don't really remember"},{"startTime":1117.75,"endTime":1121.65,"body":"seeing like the doctors"},{"startTime":1121.716,"endTime":1122.69,"body":"wouldn't come and see me."},{"startTime":1123.45,"endTime":1123.95,"body":"Yeah."},{"startTime":1124.2,"endTime":1128.579,"body":"Um so it just it felt very kind"},{"startTime":1124.2,"endTime":1128.579,"body":"of like isolating and alone,"},{"startTime":1128.646,"endTime":1129.146,"body":"you know."},{"startTime":1129.269,"endTime":1130.029,"body":"Mm hmm."},{"startTime":1130.099,"endTime":1130.759,"body":"Mm hmm."},{"startTime":1131.16,"endTime":1134.25,"body":"Like specifically the"},{"startTime":1131.16,"endTime":1134.25,"body":"like the lack of"},{"startTime":1134.609,"endTime":1136.23,"body":"that 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the"},{"startTime":1159.216,"endTime":1160.38,"body":"differences like?"},{"startTime":1160.446,"endTime":1165.42,"body":"Why why wasn't that present,"},{"startTime":1160.446,"endTime":1165.42,"body":"do you think, from your"},{"startTime":1165.486,"endTime":1165.986,"body":"experience?"},{"startTime":1166.17,"endTime":1169.2,"body":"Well, I just I didn't have the"},{"startTime":1166.17,"endTime":1169.2,"body":"chance to to really get to"},{"startTime":1169.266,"endTime":1171.509,"body":"know anybody else."},{"startTime":1171.599,"endTime":1172.099,"body":"Mm."},{"startTime":1172.17,"endTime":1174.299,"body":"And I didn't know"},{"startTime":1172.17,"endTime":1174.299,"body":"that there are actually other."},{"startTime":1175.24,"endTime":1180.509,"body":"People out there like how rare"},{"startTime":1175.24,"endTime":1180.509,"body":"but non rare this is, right,"},{"startTime":1180.576,"endTime":1181.119,"body":"so,"},{"startTime":1182.619,"endTime":1185.829,"body":"you know, I never met anybody"},{"startTime":1182.619,"endTime":1185.829,"body":"else with an immune deficiency"},{"startTime":1185.896,"endTime":1188.079,"body":"when I started university and"},{"startTime":1185.896,"endTime":1188.079,"body":"started doing this all"},{"startTime":1188.146,"endTime":1188.646,"body":"on my own."},{"startTime":1189.369,"endTime":1190.21,"body":"Right."},{"startTime":1190.299,"endTime":1194.47,"body":"So so not only are you"},{"startTime":1190.299,"endTime":1194.47,"body":"navigating different systems,"},{"startTime":1194.536,"endTime":1197.859,"body":"but you're also navigating it,"},{"startTime":1194.536,"endTime":1197.859,"body":"thinking that you're alone in"},{"startTime":1197.926,"endTime":1202.329,"body":"in your experience of these"},{"startTime":1197.926,"endTime":1202.329,"body":"systems and not and also really"},{"startTime":1202.396,"endTime":1206.559,"body":"like not getting the impression"},{"startTime":1202.396,"endTime":1206.559,"body":"necessarily that, like,"},{"startTime":1206.626,"endTime":1210.91,"body":"the doctors really"},{"startTime":1206.626,"endTime":1210.91,"body":"care about you."},{"startTime":1210.976,"endTime":1213.849,"body":"I mean, I know that they do."},{"startTime":1214.089,"endTime":1214.589,"body":"Mm hmm."},{"startTime":1215.589,"endTime":1218.95,"body":"But again, like coming from a"},{"startTime":1215.589,"endTime":1218.95,"body":"small town, I had had a family"},{"startTime":1219.016,"endTime":1220.72,"body":"doctor for many years."},{"startTime":1220.786,"endTime":1221.286,"body":"Right."},{"startTime":1221.353,"endTime":1223.329,"body":"Like I was well"},{"startTime":1221.353,"endTime":1223.329,"body":"acquainted with them."},{"startTime":1223.63,"endTime":1224.17,"body":"Mm hmm."},{"startTime":1225.4,"endTime":1226.93,"body":"And there was"},{"startTime":1225.4,"endTime":1226.93,"body":"that relationship there."},{"startTime":1226.996,"endTime":1230.23,"body":"And it's it's really hard to to"},{"startTime":1226.996,"endTime":1230.23,"body":"get that relationship when"},{"startTime":1230.589,"endTime":1233.14,"body":"you're seeing a doctor,"},{"startTime":1230.589,"endTime":1233.14,"body":"maybe like on your"},{"startTime":1233.206,"endTime":1235.96,"body":"initial visit,"},{"startTime":1233.206,"endTime":1235.96,"body":"your initial consultation,"},{"startTime":1236.026,"endTime":1239.319,"body":"and then maybe like a year"},{"startTime":1236.026,"endTime":1239.319,"body":"after that and then a year"},{"startTime":1239.386,"endTime":1241.45,"body":"after that following up and"},{"startTime":1239.386,"endTime":1241.45,"body":"then you're gone like you've"},{"startTime":1241.516,"endTime":1243.339,"body":"seen them maybe three times."},{"startTime":1243.406,"endTime":1244.099,"body":"Yeah."},{"startTime":1244.166,"endTime":1246.94,"body":"So it's a it's a"},{"startTime":1244.166,"endTime":1246.94,"body":"factor of time as well."},{"startTime":1247.299,"endTime":1247.799,"body":"Yeah."},{"startTime":1248.38,"endTime":1251.349,"body":"And you're also a busy"},{"startTime":1248.38,"endTime":1251.349,"body":"university student and they"},{"startTime":1251.416,"endTime":1253.48,"body":"don't have a lot"},{"startTime":1251.416,"endTime":1253.48,"body":"of appointments like."},{"startTime":1254.849,"endTime":1260.16,"body":"Yeah, you said that you, uh,"},{"startTime":1254.849,"endTime":1260.16,"body":"so Im moving to these"},{"startTime":1260.226,"endTime":1261.96,"body":"different systems, you mentioned"},{"startTime":1260.226,"endTime":1261.96,"body":"that you weren't"},{"startTime":1262.026,"endTime":1263.66,"body":"sure what to expect."},{"startTime":1263.849,"endTime":1269.579,"body":"Was it that, um, was it that"},{"startTime":1263.849,"endTime":1269.579,"body":"each kind of health care system"},{"startTime":1269.646,"endTime":1272.43,"body":"approached the infusion in"},{"startTime":1269.646,"endTime":1272.43,"body":"different ways?"},{"startTime":1273.869,"endTime":1278.64,"body":"Well, I mean, like back home,"},{"startTime":1273.869,"endTime":1278.64,"body":"I got I got the treatment in"},{"startTime":1278.706,"endTime":1280.47,"body":"the oncology department"},{"startTime":1281.97,"endTime":1283.5,"body":"in other cities."},{"startTime":1283.566,"endTime":1287.22,"body":"It would have been like that"},{"startTime":1283.566,"endTime":1287.22,"body":"the outpatients or, you know,"},{"startTime":1287.286,"endTime":1288.809,"body":"it was"},{"startTime":1287.286,"endTime":1288.809,"body":"just different departments."},{"startTime":1291.319,"endTime":1295.789,"body":"And yeah, different specialists"},{"startTime":1291.319,"endTime":1295.789,"body":"that would refer me to the"},{"startTime":1295.856,"endTime":1299.509,"body":"hospitals and different ways of"},{"startTime":1295.856,"endTime":1299.509,"body":"booking your appointments,"},{"startTime":1300.38,"endTime":1300.88,"body":"you know."},{"startTime":1301.41,"endTime":1301.96,"body":"Hmm."},{"startTime":1302.509,"endTime":1306.14,"body":"Just kind of never knew what"},{"startTime":1302.509,"endTime":1306.14,"body":"you were going to get when you"},{"startTime":1306.74,"endTime":1309.2,"body":"when I moved to"},{"startTime":1306.74,"endTime":1309.2,"body":"a new place, basically."},{"startTime":1309.5,"endTime":1310.22,"body":"Yeah."},{"startTime":1310.286,"endTime":1313.849,"body":"It is interesting how these"},{"startTime":1310.286,"endTime":1313.849,"body":"like when you list them out,"},{"startTime":1313.916,"endTime":1317.15,"body":"they don't seem"},{"startTime":1313.916,"endTime":1317.15,"body":"like big differences."},{"startTime":1317.216,"endTime":1321.2,"body":"But when you get into a pattern"},{"startTime":1317.216,"endTime":1321.2,"body":"and also in totality, like all"},{"startTime":1321.266,"endTime":1324.319,"body":"these little differences,"},{"startTime":1321.266,"endTime":1324.319,"body":"change your experience"},{"startTime":1324.386,"endTime":1325.43,"body":"of the situation."},{"startTime":1325.7,"endTime":1329.66,"body":"And like you said, like the"},{"startTime":1325.7,"endTime":1329.66,"body":"space you enter into affects"},{"startTime":1329.726,"endTime":1333.2,"body":"your experience of it, like you"},{"startTime":1329.726,"endTime":1333.2,"body":"were in an oncology ward in one"},{"startTime":1333.266,"endTime":1338.69,"body":"place and outpatient kind of"},{"startTime":1333.266,"endTime":1338.69,"body":"general infusion kind of area"},{"startTime":1338.756,"endTime":1339.65,"body":"in another place."},{"startTime":1339.92,"endTime":1340.42,"body":"Mm hmm."},{"startTime":1340.49,"endTime":1342.38,"body":"Those are"},{"startTime":1340.49,"endTime":1342.38,"body":"very different environments."},{"startTime":1342.619,"endTime":1343.119,"body":"Yeah."},{"startTime":1343.186,"endTime":1347.24,"body":"And I mean, also how how far"},{"startTime":1343.186,"endTime":1347.24,"body":"away is it going to be?"},{"startTime":1347.569,"endTime":1350.599,"body":"So for some of my undergrad,"},{"startTime":1347.569,"endTime":1350.599,"body":"I didn't have a vehicle, so I"},{"startTime":1350.666,"endTime":1351.73,"body":"would have to take the bus."},{"startTime":1351.796,"endTime":1352.64,"body":"So there is that."},{"startTime":1352.91,"endTime":1353.74,"body":"Yeah."},{"startTime":1354.589,"endTime":1356.869,"body":"What hours did"},{"startTime":1354.589,"endTime":1356.869,"body":"the department have."},{"startTime":1357.289,"endTime":1357.799,"body":"Mm hmm."},{"startTime":1357.98,"endTime":1360.23,"body":"And how busy was"},{"startTime":1357.98,"endTime":1360.23,"body":"it going to be?"},{"startTime":1361.91,"endTime":1366.079,"body":"You know, at the first hospital"},{"startTime":1361.91,"endTime":1366.079,"body":"that I, I went to when I"},{"startTime":1366.146,"endTime":1368.96,"body":"started my undergrad, it wasn't"},{"startTime":1366.146,"endTime":1368.96,"body":"a very busy hospital."},{"startTime":1369.026,"endTime":1372.829,"body":"So I usually could get in,"},{"startTime":1369.026,"endTime":1372.829,"body":"like, pretty quickly and get"},{"startTime":1372.896,"endTime":1373.69,"body":"out pretty quickly."},{"startTime":1373.756,"endTime":1374.9,"body":"All things considered,"},{"startTime":1373.756,"endTime":1374.9,"body":"you know, it's a"},{"startTime":1374.966,"endTime":1375.92,"body":"four hour process."},{"startTime":1375.986,"endTime":1380.18,"body":"But, yeah, I did also go to"},{"startTime":1375.986,"endTime":1380.18,"body":"another hospital at one point"},{"startTime":1380.246,"endTime":1383.48,"body":"where I would make an"},{"startTime":1380.246,"endTime":1383.48,"body":"appointment for, you know,"},{"startTime":1383.546,"endTime":1384.68,"body":"eight thirty in the morning."},{"startTime":1385.339,"endTime":1387.539,"body":"So I and I would take"},{"startTime":1385.339,"endTime":1387.539,"body":"half an hour to drive there."},{"startTime":1387.65,"endTime":1388.15,"body":"Mm hmm."},{"startTime":1388.22,"endTime":1389.809,"body":"Thank God I didn't"},{"startTime":1388.22,"endTime":1389.809,"body":"have to take the public"},{"startTime":1389.876,"endTime":1390.799,"body":"transportation for that."},{"startTime":1391.849,"endTime":1395.45,"body":"I had a car, but, you know,"},{"startTime":1391.849,"endTime":1395.45,"body":"get in there for eight"},{"startTime":1395.516,"endTime":1396.829,"body":"thirty and like."},{"startTime":1397.799,"endTime":1402.18,"body":"Maybe you're sitting around for"},{"startTime":1397.799,"endTime":1402.18,"body":"an hour or so waiting for the"},{"startTime":1402.246,"endTime":1405.059,"body":"people who maybe happened to"},{"startTime":1402.246,"endTime":1405.059,"body":"come in at the same time or"},{"startTime":1405.126,"endTime":1408.119,"body":"just before you are set"},{"startTime":1405.126,"endTime":1408.119,"body":"up and everything and like,"},{"startTime":1408.186,"endTime":1408.72,"body":"that's fine."},{"startTime":1408.786,"endTime":1410.039,"body":"And I totally understand."},{"startTime":1410.106,"endTime":1412.799,"body":"But that's just the kind of"},{"startTime":1410.106,"endTime":1412.799,"body":"thing like how do I plan my"},{"startTime":1412.866,"endTime":1414.539,"body":"life around this as well?"},{"startTime":1415.41,"endTime":1416.119,"body":"Mm hmm."},{"startTime":1417.029,"endTime":1420.569,"body":"And I think that and I think"},{"startTime":1417.029,"endTime":1420.569,"body":"that is the thing that's the"},{"startTime":1420.636,"endTime":1423.42,"body":"lived experience versus the I"},{"startTime":1420.636,"endTime":1423.42,"body":"like system perspective where"},{"startTime":1423.486,"endTime":1425.13,"body":"it's like from the system."},{"startTime":1425.196,"endTime":1426.93,"body":"It's like, well, things are"},{"startTime":1425.196,"endTime":1426.93,"body":"going to run over that."},{"startTime":1427.14,"endTime":1430.829,"body":"But it is a part of your life"},{"startTime":1427.14,"endTime":1430.829,"body":"at this point, it sounds like."},{"startTime":1431.099,"endTime":1431.599,"body":"Mm hmm."},{"startTime":1431.849,"endTime":1436.14,"body":"And so it's like one more thing"},{"startTime":1431.849,"endTime":1436.14,"body":"to navigate as a what sounds"},{"startTime":1436.206,"endTime":1438.269,"body":"like a busy"},{"startTime":1436.206,"endTime":1438.269,"body":"university student."},{"startTime":1438.66,"endTime":1443.759,"body":"So we talked about the medical"},{"startTime":1438.66,"endTime":1443.759,"body":"system and the ways that time"},{"startTime":1443.826,"endTime":1448.41,"body":"and space affect relationships"},{"startTime":1443.826,"endTime":1448.41,"body":"and also how you navigate, um,"},{"startTime":1448.869,"endTime":1451.92,"body":"uh, your experience of"},{"startTime":1448.869,"endTime":1451.92,"body":"navigating the health system."},{"startTime":1452.13,"endTime":1456.15,"body":"I'm wondering, outside of that"},{"startTime":1452.13,"endTime":1456.15,"body":"kind of looking more at your,"},{"startTime":1456.216,"endTime":1461.819,"body":"like, life, um, I'm wondering"},{"startTime":1456.216,"endTime":1461.819,"body":"if you noticed any differences"},{"startTime":1461.886,"endTime":1467.19,"body":"in how you felt about your"},{"startTime":1461.886,"endTime":1467.19,"body":"infusions compared to the first"},{"startTime":1467.256,"endTime":1470.789,"body":"few years of your infusions and"},{"startTime":1467.256,"endTime":1470.789,"body":"then several years later?"},{"startTime":1471.18,"endTime":1474.48,"body":"Well, I think I would say I"},{"startTime":1471.18,"endTime":1474.48,"body":"didn't really think too much of"},{"startTime":1474.546,"endTime":1476.849,"body":"my infusions to start."},{"startTime":1477.299,"endTime":1480.13,"body":"And I think, you know, when I"},{"startTime":1477.299,"endTime":1480.13,"body":"got to university, just the"},{"startTime":1480.196,"endTime":1485.369,"body":"more I became to I wouldn't not"},{"startTime":1480.196,"endTime":1485.369,"body":"enjoy them, I guess."},{"startTime":1485.436,"endTime":1485.936,"body":"Yeah."},{"startTime":1486.569,"endTime":1487.88,"body":"Not look forward to them."},{"startTime":1487.946,"endTime":1492.39,"body":"Um, they became more of"},{"startTime":1487.946,"endTime":1492.39,"body":"a burden, just sort of an added"},{"startTime":1492.569,"endTime":1497.099,"body":"stressor that I had to navigate"},{"startTime":1492.569,"endTime":1497.099,"body":"on my own and like really stand"},{"startTime":1497.166,"endTime":1498.299,"body":"up for myself, you know,"},{"startTime":1499.98,"endTime":1500.759,"body":"really."},{"startTime":1503.97,"endTime":1508.109,"body":"If I was having health issues"},{"startTime":1503.97,"endTime":1508.109,"body":"with with something or I"},{"startTime":1508.176,"endTime":1512.91,"body":"thought that maybe I should be"},{"startTime":1508.176,"endTime":1512.91,"body":"on antibiotics or if I thought"},{"startTime":1512.976,"endTime":1517.23,"body":"I might need a chest x ray,"},{"startTime":1512.976,"endTime":1517.23,"body":"you know, to to go in and"},{"startTime":1517.296,"endTime":1518.97,"body":"actually ask for those."},{"startTime":1519.036,"endTime":1522.089,"body":"And, you know, it kind of went"},{"startTime":1519.036,"endTime":1522.089,"body":"one of one of two ways"},{"startTime":1523.17,"endTime":1523.829,"body":"as well."},{"startTime":1524.579,"endTime":1527.64,"body":"And I mean, to boot, I also"},{"startTime":1524.579,"endTime":1527.64,"body":"didn't really have a family"},{"startTime":1527.706,"endTime":1529.5,"body":"doctor for most of that time."},{"startTime":1529.769,"endTime":1533.279,"body":"So walking clinics were pretty"},{"startTime":1529.769,"endTime":1533.279,"body":"common for me."},{"startTime":1535.349,"endTime":1540.029,"body":"But they would either be like"},{"startTime":1535.349,"endTime":1540.029,"body":"ultra cautious with me or just"},{"startTime":1540.096,"endTime":1542.099,"body":"kind of dismiss it altogether."},{"startTime":1542.39,"endTime":1544.019,"body":"Yes, right."},{"startTime":1544.38,"endTime":1546.66,"body":"And so just trying"},{"startTime":1544.38,"endTime":1546.66,"body":"to navigate that was"},{"startTime":1546.726,"endTime":1549.059,"body":"was incredibly stressful."},{"startTime":1549.539,"endTime":1550.049,"body":"Yeah."},{"startTime":1551.279,"endTime":1554.009,"body":"You know, just kind of like"},{"startTime":1551.279,"endTime":1554.009,"body":"jumping into that when I went"},{"startTime":1554.076,"endTime":1556.17,"body":"when I left for university and"},{"startTime":1554.076,"endTime":1556.17,"body":"like not having my"},{"startTime":1556.236,"endTime":1558.42,"body":"parents there, they were"},{"startTime":1556.236,"endTime":1558.42,"body":"eight hours away."},{"startTime":1558.73,"endTime":1559.589,"body":"Mm hmm."},{"startTime":1559.859,"endTime":1560.359,"body":"Right."},{"startTime":1560.426,"endTime":1562.74,"body":"So this was all on me."},{"startTime":1563.16,"endTime":1566.549,"body":"And if I had questions or"},{"startTime":1563.16,"endTime":1566.549,"body":"concerns like I was on me to"},{"startTime":1566.616,"endTime":1567.289,"body":"put them out there."},{"startTime":1567.9,"endTime":1570.98,"body":"And so that was this was a"},{"startTime":1567.9,"endTime":1570.98,"body":"pretty steep learning curve."},{"startTime":1571.046,"endTime":1572.25,"body":"Yes."},{"startTime":1572.67,"endTime":1576.96,"body":"All of a sudden, you have to be"},{"startTime":1572.67,"endTime":1576.96,"body":"the advocate for your health."},{"startTime":1577.17,"endTime":1578.15,"body":"One hundred percent."},{"startTime":1578.519,"endTime":1579.019,"body":"Yeah."},{"startTime":1579.089,"endTime":1583.23,"body":"And on top of that,"},{"startTime":1579.089,"endTime":1583.23,"body":"it sounds like, um, that like"},{"startTime":1583.589,"endTime":1586.529,"body":"at those attempts of advocacy"},{"startTime":1583.589,"endTime":1586.529,"body":"were not always"},{"startTime":1586.596,"endTime":1587.73,"body":"met receptively."},{"startTime":1588.66,"endTime":1589.529,"body":"Not always."},{"startTime":1590.369,"endTime":1594.539,"body":"And so I have to"},{"startTime":1590.369,"endTime":1594.539,"body":"grow a backbone and just"},{"startTime":1594.606,"endTime":1596.539,"body":"keep pushing that."},{"startTime":1596.606,"endTime":1600.119,"body":"I think that is uh,"},{"startTime":1596.606,"endTime":1600.119,"body":"I can relate to that."},{"startTime":1600.509,"endTime":1601.019,"body":"But that."},{"startTime":1602.66,"endTime":1606.71,"body":"I'm sorry, that still"},{"startTime":1602.66,"endTime":1606.71,"body":"is unfortunate, and I'm I'm I'm"},{"startTime":1606.776,"endTime":1608.099,"body":"sorry that that"},{"startTime":1606.776,"endTime":1608.099,"body":"was your experience."},{"startTime":1608.166,"endTime":1612.559,"body":"It has also been my experience"},{"startTime":1608.166,"endTime":1612.559,"body":"at times, but ideally,"},{"startTime":1612.626,"endTime":1614.259,"body":"that isn't how it should work."},{"startTime":1614.599,"endTime":1615.099,"body":"Yeah."},{"startTime":1615.859,"endTime":1619.279,"body":"I mean, I can think of one"},{"startTime":1615.859,"endTime":1619.279,"body":"particular instance"},{"startTime":1619.346,"endTime":1623.859,"body":"that really, I think allowed me"},{"startTime":1619.346,"endTime":1623.859,"body":"to grow most well"},{"startTime":1625.88,"endTime":1629.69,"body":"was when I was actually going"},{"startTime":1625.88,"endTime":1629.69,"body":"for a treatment for"},{"startTime":1629.756,"endTime":1630.619,"body":"an IV treatment."},{"startTime":1630.686,"endTime":1634.609,"body":"And at that point, because I"},{"startTime":1630.686,"endTime":1634.609,"body":"had been doing IV for so long,"},{"startTime":1634.676,"endTime":1636.349,"body":"I had a lot of"},{"startTime":1634.676,"endTime":1636.349,"body":"scar tissue on my hands."},{"startTime":1637.009,"endTime":1637.509,"body":"Right."},{"startTime":1638.24,"endTime":1641.69,"body":"So it's really hard for them to"},{"startTime":1638.24,"endTime":1641.69,"body":"thread the veins in my"},{"startTime":1641.756,"endTime":1642.256,"body":"hands."},{"startTime":1642.323,"endTime":1642.823,"body":"Yeah."},{"startTime":1643.339,"endTime":1647.539,"body":"And so they decided that they"},{"startTime":1643.339,"endTime":1647.539,"body":"were going to start maybe"},{"startTime":1647.606,"endTime":1649.339,"body":"putting the IV into"},{"startTime":1647.606,"endTime":1649.339,"body":"my forearm."},{"startTime":1649.91,"endTime":1652.25,"body":"And I had never had"},{"startTime":1649.91,"endTime":1652.25,"body":"that done before."},{"startTime":1652.316,"endTime":1654.799,"body":"So I kind of thought, OK,"},{"startTime":1652.316,"endTime":1654.799,"body":"we'll give it a go and"},{"startTime":1654.866,"endTime":1655.67,"body":"see what happens."},{"startTime":1655.859,"endTime":1656.359,"body":"Mm hmm."},{"startTime":1657.92,"endTime":1658.579,"body":"Test it out."},{"startTime":1659.089,"endTime":1663.559,"body":"And the so after being picked"},{"startTime":1659.089,"endTime":1663.559,"body":"like three or four times in the"},{"startTime":1663.626,"endTime":1665.39,"body":"hand and not getting"},{"startTime":1663.626,"endTime":1665.39,"body":"anything there,"},{"startTime":1667.67,"endTime":1671.39,"body":"they they tried once in my"},{"startTime":1667.67,"endTime":1671.39,"body":"forearm and it was"},{"startTime":1671.456,"endTime":1675.049,"body":"incredibly painful, like more"},{"startTime":1671.456,"endTime":1675.049,"body":"painful than I'd ever"},{"startTime":1675.116,"endTime":1676.13,"body":"experienced in my hands."},{"startTime":1677.48,"endTime":1678.46,"body":"It didn't work."},{"startTime":1679.19,"endTime":1682.009,"body":"And so they tried again in a"},{"startTime":1679.19,"endTime":1682.009,"body":"different spot in my forearm."},{"startTime":1682.109,"endTime":1682.789,"body":"Same thing."},{"startTime":1683.119,"endTime":1683.869,"body":"It didn't work."},{"startTime":1683.936,"endTime":1684.92,"body":"And it was very painful."},{"startTime":1685.25,"endTime":1685.75,"body":"Mm hmm."},{"startTime":1686.599,"endTime":1689.45,"body":"And then so after that"},{"startTime":1686.599,"endTime":1689.45,"body":"second time, I said, you know"},{"startTime":1689.516,"endTime":1690.016,"body":"what?"},{"startTime":1690.083,"endTime":1690.68,"body":"That's that's it."},{"startTime":1690.746,"endTime":1692.75,"body":"Like, I don't want to"},{"startTime":1690.746,"endTime":1692.75,"body":"have it in my forearm anymore."},{"startTime":1692.94,"endTime":1693.44,"body":"Mm hmm."},{"startTime":1693.506,"endTime":1696.109,"body":"And then so they put"},{"startTime":1693.506,"endTime":1696.109,"body":"it instead, like in the"},{"startTime":1696.71,"endTime":1697.88,"body":"underside of my elbow."},{"startTime":1698.029,"endTime":1699.849,"body":"Oh, like the AC."},{"startTime":1700.7,"endTime":1701.2,"body":"Yeah."},{"startTime":1701.266,"endTime":1701.766,"body":"Yeah."},{"startTime":1702.829,"endTime":1703.91,"body":"Which worked out fine."},{"startTime":1704.69,"endTime":1708.109,"body":"And then I actually ended up"},{"startTime":1704.69,"endTime":1708.109,"body":"developing like two huge"},{"startTime":1708.176,"endTime":1710.5,"body":"bruises on my forearm where"},{"startTime":1708.176,"endTime":1710.5,"body":"they tried to go in."},{"startTime":1710.75,"endTime":1714.049,"body":"And so it was kind of at that"},{"startTime":1710.75,"endTime":1714.049,"body":"point where I was I thought"},{"startTime":1714.116,"endTime":1719.18,"body":"to myself, you know, I have to"},{"startTime":1714.116,"endTime":1719.18,"body":"I have to speak up like I can't"},{"startTime":1719.246,"endTime":1722.96,"body":"just if something is not going"},{"startTime":1719.246,"endTime":1722.96,"body":"the way that I want to do."},{"startTime":1723.089,"endTime":1723.589,"body":"Mm hmm."},{"startTime":1724.16,"endTime":1726.009,"body":"Then I have to be"},{"startTime":1724.16,"endTime":1726.009,"body":"the one to speak up."},{"startTime":1726.076,"endTime":1731.509,"body":"And that was from then on,"},{"startTime":1726.076,"endTime":1731.509,"body":"if anybody ever said, OK,"},{"startTime":1731.576,"endTime":1734.24,"body":"we can't, we're having trouble"},{"startTime":1731.576,"endTime":1734.24,"body":"threading the veins in"},{"startTime":1734.306,"endTime":1737.15,"body":"your hands,"},{"startTime":1734.306,"endTime":1737.15,"body":"you go elsewhere immediately."},{"startTime":1737.809,"endTime":1740.779,"body":"You cannot do my"},{"startTime":1737.809,"endTime":1740.779,"body":"forearm anywhere, anywhere but"},{"startTime":1740.846,"endTime":1743.72,"body":"my forearm, you know,"},{"startTime":1740.846,"endTime":1743.72,"body":"just that kind of thing."},{"startTime":1744.68,"endTime":1746.059,"body":"Yeah, it is."},{"startTime":1746.126,"endTime":1749.779,"body":"Um, I mean, like you you live"},{"startTime":1746.126,"endTime":1749.779,"body":"in your body, you know,"},{"startTime":1749.846,"endTime":1750.38,"body":"your body."},{"startTime":1750.446,"endTime":1750.946,"body":"Right."},{"startTime":1751.013,"endTime":1752.019,"body":"And, um."},{"startTime":1752.086,"endTime":1752.586,"body":"Yeah."},{"startTime":1752.653,"endTime":1754.25,"body":"But it is hard to"},{"startTime":1752.653,"endTime":1754.25,"body":"develop that like."},{"startTime":1755.88,"endTime":1759.869,"body":"Those like assertion, but it"},{"startTime":1755.88,"endTime":1759.869,"body":"does get to like that story"},{"startTime":1759.936,"endTime":1761.64,"body":"in particular, very much"},{"startTime":1759.936,"endTime":1761.64,"body":"resonates with me."},{"startTime":1763.859,"endTime":1766.98,"body":"It gets to a certain point"},{"startTime":1763.859,"endTime":1766.98,"body":"where you're like, I don't know"},{"startTime":1767.046,"endTime":1767.759,"body":"why I like."},{"startTime":1768.91,"endTime":1772.93,"body":"I can't continue to just endure"},{"startTime":1768.91,"endTime":1772.93,"body":"the pain, like, yeah, why am I"},{"startTime":1772.996,"endTime":1773.769,"body":"putting up with this?"},{"startTime":1773.836,"endTime":1774.509,"body":"Mm hmm."},{"startTime":1775.029,"endTime":1776.019,"body":"And why indeed."},{"startTime":1776.24,"endTime":1777.589,"body":"Exactly like why?"},{"startTime":1777.7,"endTime":1779.23,"body":"Well, I don't have to."},{"startTime":1779.48,"endTime":1779.98,"body":"Yeah."},{"startTime":1780.579,"endTime":1783.039,"body":"But I will say, like,"},{"startTime":1780.579,"endTime":1783.039,"body":"it is still even though, like,"},{"startTime":1783.43,"endTime":1785.95,"body":"I don't know about you,"},{"startTime":1783.43,"endTime":1785.95,"body":"but in reflection, it is easy"},{"startTime":1786.016,"endTime":1790.839,"body":"to make these these"},{"startTime":1786.016,"endTime":1790.839,"body":"assertions like, oh, now I like"},{"startTime":1790.906,"endTime":1793.059,"body":"now I'm much more"},{"startTime":1790.906,"endTime":1793.059,"body":"comfortable asserting,"},{"startTime":1793.126,"endTime":1794.74,"body":"albeit not still perfect."},{"startTime":1796.059,"endTime":1799.66,"body":"But I think it is easy to"},{"startTime":1796.059,"endTime":1799.66,"body":"overlook in reflection the fact"},{"startTime":1799.726,"endTime":1802.72,"body":"that it is like in"},{"startTime":1799.726,"endTime":1802.72,"body":"terms of power."},{"startTime":1802.786,"endTime":1806.769,"body":"It is if it is overwhelming,"},{"startTime":1802.786,"endTime":1806.769,"body":"you're kind of advocating from"},{"startTime":1807.009,"endTime":1810.069,"body":"like the lower side of"},{"startTime":1807.009,"endTime":1810.069,"body":"that power equation."},{"startTime":1810.309,"endTime":1810.809,"body":"Mm hmm."},{"startTime":1811.119,"endTime":1813.7,"body":"Which is really hard."},{"startTime":1813.766,"endTime":1814.38,"body":"It's tough."},{"startTime":1814.446,"endTime":1814.946,"body":"Yeah."},{"startTime":1815.013,"endTime":1819.73,"body":"And not everyone is"},{"startTime":1815.013,"endTime":1819.73,"body":"open to listening to you."},{"startTime":1820.15,"endTime":1820.819,"body":"Mm hmm."},{"startTime":1821.69,"endTime":1822.329,"body":"Yes."},{"startTime":1822.396,"endTime":1826.509,"body":"And as you spoke to,"},{"startTime":1822.396,"endTime":1826.509,"body":"not everyone believes you and"},{"startTime":1826.576,"endTime":1827.529,"body":"will dismiss you."},{"startTime":1827.596,"endTime":1830.89,"body":"And I think I don't know"},{"startTime":1827.596,"endTime":1830.89,"body":"about you, but like that that"},{"startTime":1830.956,"endTime":1832.96,"body":"in particular"},{"startTime":1830.956,"endTime":1832.96,"body":"is like particularly"},{"startTime":1833.619,"endTime":1834.759,"body":"brutal and annoying."},{"startTime":1835.15,"endTime":1835.65,"body":"Mm hmm."},{"startTime":1835.716,"endTime":1836.799,"body":"Thank you for"},{"startTime":1835.716,"endTime":1836.799,"body":"sharing that story."},{"startTime":1836.866,"endTime":1837.779,"body":"I really appreciate it."},{"startTime":1838.119,"endTime":1844.839,"body":"So moving forward to, um,"},{"startTime":1838.119,"endTime":1844.839,"body":"know that you're now I say now"},{"startTime":1844.906,"endTime":1847.96,"body":"over the like let's say"},{"startTime":1844.906,"endTime":1847.96,"body":"the last, because the pandemic"},{"startTime":1848.026,"endTime":1849.49,"body":"is a unique situation,"},{"startTime":1852.069,"endTime":1855.65,"body":"like in the last, um,"},{"startTime":1852.069,"endTime":1855.65,"body":"let's say the last two years."},{"startTime":1855.716,"endTime":1859.029,"body":"What do your infusions look"},{"startTime":1855.716,"endTime":1859.029,"body":"like and how are they different"},{"startTime":1859.096,"endTime":1860.109,"body":"than previously?"},{"startTime":1860.529,"endTime":1866.019,"body":"OK, so so I started"},{"startTime":1860.529,"endTime":1866.019,"body":"subcutaneous treatments about"},{"startTime":1866.086,"endTime":1867.4,"body":"almost six years ago now."},{"startTime":1867.819,"endTime":1872.289,"body":"Well, um, which was I'm like so"},{"startTime":1867.819,"endTime":1872.289,"body":"happy that I did that."},{"startTime":1873.009,"endTime":1874.869,"body":"It's it works so well for me."},{"startTime":1874.99,"endTime":1882.49,"body":"Um, and I mean I got into it"},{"startTime":1874.99,"endTime":1882.49,"body":"because I did start my job as"},{"startTime":1882.556,"endTime":1886.089,"body":"an environmental consultant and"},{"startTime":1882.556,"endTime":1886.089,"body":"it just wasn't feasible for me"},{"startTime":1886.156,"endTime":1891.43,"body":"to be taking a day"},{"startTime":1886.156,"endTime":1891.43,"body":"off for infusions once a month"},{"startTime":1891.496,"endTime":1893.65,"body":"anymore because, you know,"},{"startTime":1891.496,"endTime":1893.65,"body":"you only get so many"},{"startTime":1893.716,"endTime":1894.49,"body":"sick days."},{"startTime":1894.556,"endTime":1896.769,"body":"And then what happens"},{"startTime":1894.556,"endTime":1896.769,"body":"if I actually get sick?"},{"startTime":1897.5,"endTime":1899.14,"body":"I don't have any left over."},{"startTime":1900.759,"endTime":1902.71,"body":"Yes, so there's that."},{"startTime":1902.776,"endTime":1908.589,"body":"But also, you know, as an entry"},{"startTime":1902.776,"endTime":1908.589,"body":"level junior consultant,"},{"startTime":1909.94,"endTime":1913.119,"body":"I really wanted to be able to"},{"startTime":1909.94,"endTime":1913.119,"body":"say yes to opportunities like"},{"startTime":1913.359,"endTime":1915.94,"body":"traveling to other offices or"},{"startTime":1913.359,"endTime":1915.94,"body":"going and doing field work."},{"startTime":1916.45,"endTime":1920.44,"body":"And when you're on a monthly"},{"startTime":1916.45,"endTime":1920.44,"body":"IV schedule, sometimes that"},{"startTime":1920.506,"endTime":1921.789,"body":"clashes and it"},{"startTime":1920.506,"endTime":1921.789,"body":"just doesn't work."},{"startTime":1921.856,"endTime":1925.45,"body":"And I didn't want to have to"},{"startTime":1921.856,"endTime":1925.45,"body":"say no to those opportunities"},{"startTime":1925.516,"endTime":1928.45,"body":"just to keep my appointment at"},{"startTime":1925.516,"endTime":1928.45,"body":"the hospital, because often,"},{"startTime":1928.779,"endTime":1930.94,"body":"um, if you cancelled a"},{"startTime":1928.779,"endTime":1930.94,"body":"hospital appointment,"},{"startTime":1931.006,"endTime":1933.16,"body":"you couldn't get in for another"},{"startTime":1931.006,"endTime":1933.16,"body":"month or two or three."},{"startTime":1933.259,"endTime":1934.599,"body":"Yeah, right."},{"startTime":1934.9,"endTime":1938.17,"body":"So that made it really"},{"startTime":1934.9,"endTime":1938.17,"body":"difficult to have a"},{"startTime":1938.236,"endTime":1940.119,"body":"flexible work schedule."},{"startTime":1940.42,"endTime":1940.92,"body":"Mm hmm."},{"startTime":1941.92,"endTime":1945.43,"body":"So I started looking into the"},{"startTime":1941.92,"endTime":1945.43,"body":"option of doing subcutaneous"},{"startTime":1945.496,"endTime":1947.619,"body":"treatments because I sort of"},{"startTime":1945.496,"endTime":1947.619,"body":"heard about it."},{"startTime":1947.95,"endTime":1952.869,"body":"But I had always had the"},{"startTime":1947.95,"endTime":1952.869,"body":"impression that it was just"},{"startTime":1952.936,"endTime":1954.369,"body":"something that they did"},{"startTime":1952.936,"endTime":1954.369,"body":"over in Europe."},{"startTime":1954.436,"endTime":1955.94,"body":"And it wasn't really"},{"startTime":1954.436,"endTime":1955.94,"body":"in Canada yet."},{"startTime":1956.006,"endTime":1959.21,"body":"Yeah, there's vague rumors of"},{"startTime":1956.006,"endTime":1959.21,"body":"this thing called."},{"startTime":1959.276,"endTime":1964.779,"body":"So I will say I also"},{"startTime":1959.276,"endTime":1964.779,"body":"had heard I still like when I"},{"startTime":1964.846,"endTime":1967.329,"body":"think back, I don't know who"},{"startTime":1964.846,"endTime":1967.329,"body":"was who was talking about"},{"startTime":1967.396,"endTime":1970.029,"body":"these rumors, but there was"},{"startTime":1967.396,"endTime":1970.029,"body":"always this like for years,"},{"startTime":1970.096,"endTime":1970.779,"body":"this rumor."},{"startTime":1973.089,"endTime":1979.93,"body":"So, um, so my specialist at"},{"startTime":1973.089,"endTime":1979.93,"body":"the time, I think set me up"},{"startTime":1979.996,"endTime":1982.9,"body":"with one of the other"},{"startTime":1979.996,"endTime":1982.9,"body":"specialists in the area that"},{"startTime":1983.44,"endTime":1985.15,"body":"did subcutaneous treatments."},{"startTime":1986.319,"endTime":1989.2,"body":"I had one appointment with him"},{"startTime":1986.319,"endTime":1989.2,"body":"before I moved to"},{"startTime":1989.266,"endTime":1989.89,"body":"a different city."},{"startTime":1991.66,"endTime":1995.71,"body":"So I never really got set up"},{"startTime":1991.66,"endTime":1995.71,"body":"with subcu in that in"},{"startTime":1995.776,"endTime":1996.64,"body":"that previous city."},{"startTime":1996.706,"endTime":1997.206,"body":"Yeah."},{"startTime":1997.809,"endTime":2002.369,"body":"But then came here and"},{"startTime":1997.809,"endTime":2002.369,"body":"got in with an amazing"},{"startTime":2002.436,"endTime":2003.18,"body":"health care team."},{"startTime":2004.049,"endTime":2005.88,"body":"Um, it makes a big difference."},{"startTime":2005.946,"endTime":2007.74,"body":"It makes a huge difference."},{"startTime":2007.92,"endTime":2009.329,"body":"Um, yeah."},{"startTime":2010.23,"endTime":2013.74,"body":"I have somebody who actually"},{"startTime":2010.23,"endTime":2013.74,"body":"like who read through my entire"},{"startTime":2013.806,"endTime":2017.97,"body":"file and learned everything"},{"startTime":2013.806,"endTime":2017.97,"body":"about me and was actually able"},{"startTime":2018.036,"endTime":2020.759,"body":"to answer my questions"},{"startTime":2018.036,"endTime":2020.759,"body":"and like, for instance,"},{"startTime":2020.826,"endTime":2023.64,"body":"told me, you know, you can"},{"startTime":2020.826,"endTime":2023.64,"body":"actually get some vaccines."},{"startTime":2023.849,"endTime":2026.619,"body":"Haven't hadn't had a vaccine"},{"startTime":2023.849,"endTime":2026.619,"body":"since I was in grade three."},{"startTime":2026.73,"endTime":2027.359,"body":"Oh, wow."},{"startTime":2027.539,"endTime":2030.839,"body":"That's that's kind of a big,"},{"startTime":2027.539,"endTime":2030.839,"body":"important thing, if you"},{"startTime":2030.906,"endTime":2031.406,"body":"can."},{"startTime":2031.92,"endTime":2032.42,"body":"Yeah."},{"startTime":2032.486,"endTime":2036.66,"body":"So so that was kind of a big"},{"startTime":2032.486,"endTime":2036.66,"body":"light bulb moment as well."},{"startTime":2038.43,"endTime":2041.16,"body":"And then they also have a"},{"startTime":2038.43,"endTime":2041.16,"body":"dedicated nurse to train"},{"startTime":2041.226,"endTime":2043.24,"body":"for subcutaneous treatments."},{"startTime":2043.306,"endTime":2043.806,"body":"Mm hmm."},{"startTime":2044.549,"endTime":2049.05,"body":"So I started that about a month"},{"startTime":2044.549,"endTime":2049.05,"body":"after I moved here and kind of"},{"startTime":2049.17,"endTime":2054.449,"body":"like never looked back because"},{"startTime":2049.17,"endTime":2054.449,"body":"it's just amazing being able to"},{"startTime":2054.516,"endTime":2059.579,"body":"do the subcu subcutaneous"},{"startTime":2054.516,"endTime":2059.579,"body":"treatments on my own."},{"startTime":2059.76,"endTime":2060.51,"body":"First of all."},{"startTime":2060.659,"endTime":2061.159,"body":"Mm hmm."},{"startTime":2061.469,"endTime":2063.21,"body":"So I don't have"},{"startTime":2061.469,"endTime":2063.21,"body":"to go into the hospital."},{"startTime":2063.659,"endTime":2066.3,"body":"I don't have to take time off"},{"startTime":2063.659,"endTime":2066.3,"body":"of work because I can do them"},{"startTime":2066.366,"endTime":2067.389,"body":"on my own schedule."},{"startTime":2067.456,"endTime":2067.956,"body":"Yeah."},{"startTime":2068.07,"endTime":2072.69,"body":"Um, and because I can do them"},{"startTime":2068.07,"endTime":2072.69,"body":"on my own schedule, I don't"},{"startTime":2072.756,"endTime":2075.21,"body":"have to say no to"},{"startTime":2072.756,"endTime":2075.21,"body":"any work opportunities as well."},{"startTime":2075.36,"endTime":2075.86,"body":"Mm hmm."},{"startTime":2076.409,"endTime":2078.36,"body":"So I can basically work"},{"startTime":2076.409,"endTime":2078.36,"body":"around my life."},{"startTime":2078.75,"endTime":2084.03,"body":"I can basically I can live the"},{"startTime":2078.75,"endTime":2084.03,"body":"way I want to and work."},{"startTime":2084.94,"endTime":2088.19,"body":"All of my health care around"},{"startTime":2084.94,"endTime":2088.19,"body":"how I want to live."},{"startTime":2088.659,"endTime":2092.23,"body":"Yeah, which is kind of the"},{"startTime":2088.659,"endTime":2092.23,"body":"opposite of how it used to"},{"startTime":2092.296,"endTime":2092.796,"body":"be."},{"startTime":2092.863,"endTime":2093.48,"body":"Yes."},{"startTime":2093.67,"endTime":2096.07,"body":"Of working my life around"},{"startTime":2093.67,"endTime":2096.07,"body":"my treatment schedule."},{"startTime":2096.199,"endTime":2096.969,"body":"Mhm."},{"startTime":2097.75,"endTime":2098.25,"body":"It is."},{"startTime":2098.5,"endTime":2100.84,"body":"It sounds like a small change,"},{"startTime":2098.5,"endTime":2100.84,"body":"but it makes a"},{"startTime":2100.906,"endTime":2102.179,"body":"world of difference."},{"startTime":2102.489,"endTime":2102.989,"body":"Yeah."},{"startTime":2103.056,"endTime":2105.34,"body":"And it's only about an"},{"startTime":2103.056,"endTime":2105.34,"body":"hour a week."},{"startTime":2105.406,"endTime":2105.906,"body":"Right."},{"startTime":2105.973,"endTime":2110.5,"body":"So it's not even a huge time"},{"startTime":2105.973,"endTime":2110.5,"body":"commitment and there's still"},{"startTime":2110.566,"endTime":2114.039,"body":"the flexibility of if I know"},{"startTime":2110.566,"endTime":2114.039,"body":"that I won't be able to do a"},{"startTime":2114.106,"endTime":2116.079,"body":"treatment for a couple of weeks"},{"startTime":2114.106,"endTime":2116.079,"body":"if I want to travel,"},{"startTime":2116.146,"endTime":2120.789,"body":"for instance, I can just sort"},{"startTime":2116.146,"endTime":2120.789,"body":"of do two or three treatments"},{"startTime":2121.21,"endTime":2124.96,"body":"in a row kind of before I go"},{"startTime":2121.21,"endTime":2124.96,"body":"get that all in and then know"},{"startTime":2125.026,"endTime":2128.44,"body":"that I'm relatively protected"},{"startTime":2125.026,"endTime":2128.44,"body":"while I while I'm traveling."},{"startTime":2129.07,"endTime":2131.679,"body":"Everyone, I think, has their"},{"startTime":2129.07,"endTime":2131.679,"body":"own approach to what they"},{"startTime":2131.746,"endTime":2132.909,"body":"do during confusion."},{"startTime":2132.976,"endTime":2136.389,"body":"What do you do while you're at"},{"startTime":2132.976,"endTime":2136.389,"body":"home infusing for that hour?"},{"startTime":2137.889,"endTime":2145.179,"body":"So I usually get a drink that I"},{"startTime":2137.889,"endTime":2145.179,"body":"want to drink ideal, whether it"},{"startTime":2145.246,"endTime":2151.059,"body":"is like a Coke or a hot"},{"startTime":2145.246,"endTime":2151.059,"body":"chocolate or a cup of coffee"},{"startTime":2151.539,"endTime":2155.829,"body":"or whatever, something that I"},{"startTime":2151.539,"endTime":2155.829,"body":"know is going to bring"},{"startTime":2155.896,"endTime":2159.099,"body":"me comfort, maybe a snack also"},{"startTime":2155.896,"endTime":2159.099,"body":"that I know is going to bring"},{"startTime":2159.166,"endTime":2159.67,"body":"me comfort"},{"startTime":2161.199,"endTime":2163.96,"body":"and sit down and"},{"startTime":2161.199,"endTime":2163.96,"body":"put on the Netflix"},{"startTime":2166.9,"endTime":2167.619,"body":"and."},{"startTime":2168.19,"endTime":2171.429,"body":"Yeah, just kind of joke and"},{"startTime":2168.19,"endTime":2171.429,"body":"have a little bit of,"},{"startTime":2171.496,"endTime":2175.599,"body":"you know, me time disconnected"},{"startTime":2171.496,"endTime":2175.599,"body":"from everything else and."},{"startTime":2176.67,"endTime":2180.119,"body":"Yeah, yeah, that like"},{"startTime":2176.67,"endTime":2180.119,"body":"disconnection and kind of like"},{"startTime":2180.186,"endTime":2183.9,"body":"focus on self is seems like a"},{"startTime":2180.186,"endTime":2183.9,"body":"common theme and certainly one"},{"startTime":2183.966,"endTime":2186.809,"body":"that that I resonate"},{"startTime":2183.966,"endTime":2186.809,"body":"with as well."},{"startTime":2187.559,"endTime":2192.42,"body":"So I'm wondering just quickly,"},{"startTime":2187.559,"endTime":2192.42,"body":"what is if you could go back in"},{"startTime":2192.486,"endTime":2195.929,"body":"time and talk to yourself just"},{"startTime":2192.486,"endTime":2195.929,"body":"prior to your first infusion"},{"startTime":2195.996,"endTime":2199.86,"body":"and give your younger"},{"startTime":2195.996,"endTime":2199.86,"body":"self a piece of advice?"},{"startTime":2200.01,"endTime":2200.579,"body":"What would it be?"},{"startTime":2201.289,"endTime":2204.449,"body":"Uh, I think it would be just to"},{"startTime":2201.289,"endTime":2204.449,"body":"know that there are other"},{"startTime":2204.516,"endTime":2209.219,"body":"people out there that have"},{"startTime":2204.516,"endTime":2209.219,"body":"immune deficiencies and that."},{"startTime":2210.57,"endTime":2213.429,"body":"You know, there are other"},{"startTime":2210.57,"endTime":2213.429,"body":"people that you can relate to."},{"startTime":2213.496,"endTime":2216.449,"body":"There are people that"},{"startTime":2213.496,"endTime":2216.449,"body":"you can talk to and"},{"startTime":2218.369,"endTime":2221.579,"body":"don't be afraid to speak"},{"startTime":2218.369,"endTime":2221.579,"body":"up for your health care."},{"startTime":2221.76,"endTime":2223.409,"body":"That's wonderful advice."},{"startTime":2223.5,"endTime":2224.0,"body":"Thank you."},{"startTime":2224.429,"endTime":2230.219,"body":"And in wrapping up, this brings"},{"startTime":2224.429,"endTime":2230.219,"body":"us to the last segment, which I"},{"startTime":2230.286,"endTime":2233.489,"body":"always like, because it's"},{"startTime":2230.286,"endTime":2233.489,"body":"a pun, um, which is"},{"startTime":2233.556,"endTime":2234.639,"body":"sweet as pie."},{"startTime":2234.869,"endTime":2239.28,"body":"So I'm wondering, what is one"},{"startTime":2234.869,"endTime":2239.28,"body":"gift that you have received"},{"startTime":2239.346,"endTime":2242.23,"body":"from living a life"},{"startTime":2239.346,"endTime":2242.23,"body":"with primary meal deficiency?"},{"startTime":2242.94,"endTime":2248.25,"body":"I think that one gift that I've"},{"startTime":2242.94,"endTime":2248.25,"body":"received from living with"},{"startTime":2248.316,"endTime":2249.599,"body":"primary deficiencies"},{"startTime":2252.269,"endTime":2255.059,"body":"would lie in the connection"},{"startTime":2252.269,"endTime":2255.059,"body":"that I've been able to"},{"startTime":2255.126,"endTime":2258.329,"body":"establish with others"},{"startTime":2255.126,"endTime":2258.329,"body":"who also have primary"},{"startTime":2258.599,"endTime":2261.309,"body":"immune deficiencies has."},{"startTime":2261.376,"endTime":2263.909,"body":"It's really given me a chance"},{"startTime":2261.376,"endTime":2263.909,"body":"to understand what other people"},{"startTime":2263.976,"endTime":2268.71,"body":"go through and see what our"},{"startTime":2263.976,"endTime":2268.71,"body":"shared experiences are."},{"startTime":2268.776,"endTime":2273.269,"body":"I know that I'm not alone and"},{"startTime":2268.776,"endTime":2273.269,"body":"they're not alone either and"},{"startTime":2273.336,"endTime":2275.699,"body":"really just"},{"startTime":2273.336,"endTime":2275.699,"body":"supporting each other."},{"startTime":2275.766,"endTime":2280.0,"body":"That's been that's been a"},{"startTime":2275.766,"endTime":2280.0,"body":"tremendous gift from my"},{"startTime":2280.59,"endTime":2283.679,"body":"you know, I'm thankful that"},{"startTime":2280.59,"endTime":2283.679,"body":"I've been able to go through"},{"startTime":2283.746,"endTime":2288.86,"body":"it successfully, thankful for"},{"startTime":2283.746,"endTime":2288.86,"body":"the people that I've met, um,"},{"startTime":2289.26,"endTime":2292.139,"body":"thankful for the strength that"},{"startTime":2289.26,"endTime":2292.139,"body":"it's brought to myself"},{"startTime":2292.206,"endTime":2292.969,"body":"and my family."},{"startTime":2293.28,"endTime":2294.38,"body":"I hadn't thought about that."},{"startTime":2294.446,"endTime":2296.21,"body":"That's a beautiful gift"},{"startTime":2294.446,"endTime":2296.21,"body":"as well."},{"startTime":2296.55,"endTime":2297.05,"body":"Thank you."},{"startTime":2297.269,"endTime":2299.909,"body":"And in wrapping up"},{"startTime":2297.269,"endTime":2299.909,"body":"the podcast, I also want to"},{"startTime":2299.976,"endTime":2303.63,"body":"thank the Canadian immuno"},{"startTime":2299.976,"endTime":2303.63,"body":"deficient patient organization"},{"startTime":2303.696,"endTime":2306.889,"body":"without which this podcast"},{"startTime":2303.696,"endTime":2306.889,"body":"would not exist."},{"startTime":2306.956,"endTime":2308.849,"body":"And so thank"},{"startTime":2306.956,"endTime":2308.849,"body":"you again to Sepo."},{"startTime":2309.34,"endTime":2312.32,"body":"If you heard something today"},{"startTime":2309.34,"endTime":2312.32,"body":"that resonated with you."},{"startTime":2312.386,"endTime":2317.61,"body":"Feel free to send me an email"},{"startTime":2312.386,"endTime":2317.61,"body":"at podcast at Sepo Dossier."},{"startTime":2318.0,"endTime":2323.039,"body":"That IPO, whatever you share,"},{"startTime":2318.0,"endTime":2323.039,"body":"we may use it in the final"},{"startTime":2323.106,"endTime":2325.42,"body":"episode and we might"},{"startTime":2323.106,"endTime":2325.42,"body":"share it with everyone else."},{"startTime":2325.486,"endTime":2327.849,"body":"I'm very curious"},{"startTime":2325.486,"endTime":2327.849,"body":"about your experience."},{"startTime":2327.916,"endTime":2330.449,"body":"Obviously, I will only use"},{"startTime":2327.916,"endTime":2330.449,"body":"first name, so just keep that"},{"startTime":2330.516,"endTime":2331.98,"body":"in mind if you"},{"startTime":2330.516,"endTime":2331.98,"body":"do want to reach out."},{"startTime":2332.219,"endTime":2336.929,"body":"And I hope that you'll join me"},{"startTime":2332.219,"endTime":2336.929,"body":"in two weeks time when we"},{"startTime":2337.05,"endTime":2340.889,"body":"continue exploring the"},{"startTime":2337.05,"endTime":2340.889,"body":"complexities of living with"},{"startTime":2340.956,"endTime":2344.28,"body":"primary immune deficiency in"},{"startTime":2340.956,"endTime":2344.28,"body":"all of its positive"},{"startTime":2344.346,"endTime":2345.599,"body":"and negative complexity."},{"startTime":2346.079,"endTime":2346.53,"body":"Thank you."}]}